Advice for Better Living Archives

Who is taking Remicade and what have your results been?

I have been taking remicade since Oct 2000.  I have a dx of severe active RA, sudden onset, negative RA factor.This occurred in January, 1997.  I was on Arava before the remicade & it just wasn't doing the job. I had been on pred. 20mg for almost 3 yrs and was very slowly decreasing to where I was on 17 or 18mg when I started the remicade. Everytime I dropped a mg. I had severe painful reaction.I didn't get the overnight miracle some experience, but I have more of a gradual improvement.  The swelling in my wrists that I've had since the beginning disappeared a few days after my second treament but the pain seemed almost worse sometimes for awhile but gradually the pain has decreased and the pain medications I take are so much more effective.  I had my first hip replacement about 8 months prior to starting the remicade and had to have the other side done about six months after I was on the remicade.  I have had so much improvement on the remicade. I haven't had a day that I've spent entirely in bed after a couple of treatments.  I am able to go shopping with my hubby if I plan it during the peak of pain relief from the pain meds.  I can cook simple meals now and I don't need assistance in dressing, putting on shoes  and getting in and out of the shower if it's done later in the day.  I don't wake up in excruciating pain anymore.  I still have bad pain when I wake up in the mornings but once the pain meds start working I can start moving around and doing a few things and then come the mid to early afternoon I can accomplish more house cleaning and start planning my evening meal. For the first year the treatment didn't last the full 2 months and the dr increased my dosage I think 3 or 4 times.  The last treatment I got was in Nov and I'm due to have another one the 15th of this month and its effectiveness has lasted longer this time.  I sleep longer and better.  I don't wake up several times during the night anymore and I sleep sometimes 8 hours or more, something I hadn't done in several years.  I am also on the meth 25mg injection weekly and a host of other meds.  I was also diagnosed with myelodysplasia at the same time of the RA diagnosis.  It's also called pre-leukemia.  I don't have it yet but am on a chemo pill every 3 days to try and prevent it from developing.  I would be interested in hearing from anyone who also may have this combination of RA and myelodysplasia because I think the two are related in my case.  My dr has only treated one other person with this combination.  The good news would be that there is no one else that has this so I hope I don't hear from anyone.  I've gone on way too long.  Any questions, just email me.  Don't get to the pc too often but when I do I take care of messages first.  God Bless and I am ever thankful for the results I'm getting from the Remicade.  One thing I might mention is that one drawback is I have had a few infections more than usual because of the suppression of the immune system.  Right now I'm being treated for an eye infection resulting from the same virus that causes fever blisters only its in my eye.  Never heard of it before but leave it to me to come up with something like this, although I guess it can be common in people with RA.  Once again I hope no one here has experienced this complication.  God Bless - Katy

I have been on Remicade (an infusion every 8 weeks) since March, 2001. Prior to that I was on Vioxx, Plaquenil, prednisone and Methatrexate. My rheumatologist wanted me to remain on all these medications except for prednisone after I started Remicade treatments. Luckily, for the first time in 3 years, I was able to get off and stay off prednisone. (It took three Remicade treatments before I felt any significant changes). Unfortunately, I had already suffered significant damage to my hip and in December, 2001 I had to have a total hip replacement in my left hip. At the moment I have been off ALL medication since mid-December and have no arthritic symptoms. (I haven't had a Remicade infusion for 2 months). When I am completely healed from the surgery I hope to go back on Remicade. There was some question about whether it would be safe to do that with an artificial hip but both my surgeon and rheumatologist say the latest evidence indicates that it will be OK. So for me, Remicade has proven to be a miracle drug, and no side effects.

 

I was wondering if anyone else has had a dramatic reduction of arthritic symptoms following surgery. It's weird--other than some pain and a little inflammation at the site of the incision, I HAVE NO SYMPTOMS AND AM ON NO MEDICATION. -N

I tired Remicade back in October, having the infusion done at the hospital.  I felt no pain when I left that day but within a few hours, all the pain was back and I was not feeling well at all.  It took a few days of getting sicker and sicker and finally landing in the emergency room not knowing who or where I was.  My husband thinks it was the Remicade that put me there but I wonder if it was not because I wasn't in the best of health when I went for the infusion.  Who knows.....but my Rheumatologist stopped the infusion immediately and now I am on Enbrel.  I've only had three self injections and I find it very difficult to "poke" myself.  I know I have to think positive but it's very hard to stick a needle into ones tummy.  So far I have not noticed any relief but I read that it takes, sometimes, up to six weeks or more to notice any.

If anyone else is taking Enbrel with good results or taken it and quit, I'd like to hear from them.  I'm interested in Kineret also although it's a daily, self injecting medication........  :o(       What happened to the old  pill form of drugs? -Carmen

I HAD GOOD RESULTS AFTER THE 1ST TREATMENT. THE RESULTS, HOWEVER ONLY LASTED 2 WEEKS. SECOND TREATMENT ALSO ONLY HELPED FOR 2 WEEKS AND IN FACT BECAME WORSE! THE THIRD TREATMENT LASTED 4 DAYS AND BACK TO FEELING WORSE THAN BEFORE I STARTED ON IT. THE INFUSION NURSE SAID SHE HAS HAD ONLY 2 OTHERS WHO HAD REVERSE REACTIONS. I WENT BACK TO ENBREL AND WILL HOPEFULLY BE ABLE TO TRY KINERET ONCE MY INSURANCE AGREES TO PAY -Marlena

I have been on Remicade since early last spring 2001. I had been taking Arava which just was not holding things at bay. I added Remicade to that and haven't looked back. It is so nice to feel like the average non-arthritic person. It had been nearly 20 years I think since I felt this good. Even my neighbor noticed I was sitting in the yard planting flowers -- on my knees. It had been five years since that had been possible. Look here to see what I did last Spring and early Summer.
http://people.ne.mediaone.net/maroldc/garden/garden.html 
My husband was so used to me just sitting and he said the change in me was going to kill him. LOL I had him out side every evening hauling rocks [we live in New England] I dug out of the new garden beds. Just wait until next spring -- you should see what I planted in the fall.
The best news is that the Iritis [arthritis of the iris of the eye] is finally in control. Because it was controlled, I was able to have cataract surgery this December and can see again in my right eye. [Yes, the cataract was due to predforte drops, a steroid, given to save the sight in the eye.]
I can get up and down off the floor easily; I don't seem to have weather change aching but this may be an illusion as the weather hasn't done it's normal swinging wildly this winter; I don't have any morning stiffness. Life is pretty good.
I am slowly tapering prednisone: I am at 9mg at the present and slowly, very slowly moving to nothing. I have moved to taking my NSAID on an as needed basis instead of daily. Once the pred. is down, hope to be able to move my Arava dose to 10mg instead of the 20mg I now take. Wow, what a concept -- less medication.
So do I qualify as a Remicade Rowdie -- I think I do!!
Duckie 

I have RA and started out on methotrexate which after 2 months put me in the hospital for 7 days-almost killed me. My rheumatologist suggested remicade and assured that the side effects were non existant--the second infusion shot my blood pressure up to 220 and hospitalized me in cardiac care--damaged my heart-a few months later, due to the damage I had sudden cardiac arrest--10 days in hospital--now have a defrilillator/pacemaker implant. I found out after all this, from the manufacturer and from the national institute of health that remicade can lower or raise your blood pressure and too fast an infusion can cause what I experienced. I afterwards found out from my rheumatologist that he did increase the infusion rate for the second infusion stating that it was "standard procedure"--he should have never done that as I had a heart murmer since childhood-needless to say I am suing the rheumatologist & manufacturer.

The Arthritis Foundation and the manufacturer of remicade just this past month published warnings about remicade--it is very dangerous to anyone who has a heart condition--seven people have died from it.

I absolutely refuse to use any more dmards or nsaids. I am starting the antibiotic protocol (roadback.org). I've researched it--it has a history of being equal to or better than any present dmards or nsaids without the dangerous side effects and cost's less than $20.00 a month. If you're interested go to the roadback.org website and do some research.

good luck

vince m

I'm sure that you may have covered something like this before, but I'm getting married and I need advice on how to let my fiancee know how I feel with RA & what he can do to help me with the pain of RA. So, some question on how a spouse can be supportive of the RA would help!
Thanks

I would say that always having good communication from the start of a new marriage is most important. My husband can almost read my mind (lol), but not always. So it's important for me to let him know how I'm feeling on any given day. He helps a lot with just little things like picking up after himself, carrying out the trash, lifting heavy things, removing heavy dishes from the oven, caring for the lawn, and so many other things. I think the key is to tell your husband what you need help with. He just doesn't know unless you tell him. Another thing is not to feel guilty in asking for help and receiving it. We have to be good receivers too. I always give my husband a hug or little peck on the cheek and say thank you when he helps me out. Try and educate your fiance' or new husband on the disease of Arthritis so he can better understand. I think a very good thing is for the husband to go with the wife if he can for her doctor appointments. My husband always goes with me and it is such a support for me and very educational for him as well. Communication is the key. 
Good luck in your new marriage!! 
-Linda 

Hi! My name is Lynn and I too am engaged to be married. I was diagnosed with RA just this past November 21st. It appears that you and I have a lot in common because of this. In your question you didn't reveal very much of your particular circumstance in reference to your RA; how long you've had it, how it affects your everyday life, what drug regimen you are currently on ... well, you didn't say a whole lot of anything in reference to it except that you do have some pain with it and it affects your feelings, which I took to mean affects your day to day life as mine does. Also, you didn't say anything about this man of whom you are engaged to and how long you have known him or anything. So, I am going to assume that you know him in the same way that I know my fiancee. I met my Kenny 19 months ago and we became engaged this past June. Kenny and I have a very open and honest relationship from the get go and this is one reason we love one another so much. We have nothing to hide and are very secure in our feelings for one another. When RA made it's entrance into my life I was already suffering some of the effects when I first met Kenny although my aches did not have a diagnoses attached to it. (Mine started with foot pain that was quite severe, and my being an RN working in a CCU in a Hospital surely did a number on my feet each day that I worked.) When I was diagnosed with RA, it was in the way of ruling out Cancer, and discovering that the growth/tissue mass in my right foot was due to RA and not a malignant cancer. So, Kenny has been in on the beginning of the RA with me the entire time. However, I did have to communicate to him how bad the pain is and continues to be as it has changed quite a bit in a very short time ... since October I'd say. I had a lot of learning to do about RA also, and everything that I learned I shared with Kenny. Also, the day I got the diagnoses he was at work and I had called to tell him what the oncologist had told me, namely that it wasn't cancer, but was RA. Kenny then took it upon himself to look up RA himself and he began to learn about it just as I did. But again, there was no way for him to realize the full effect of the pain that I had and would continue to have, as well as the fatigue and those days that I could not even seem to get out of bed and move around. So, I had to tell him. I told him frankly and to the point. I tried to be as truthful as possible in describing my pain and one way that I did this was to use the scale that I used at work when I would get my patients to tell me how their pain was. On a scale of 1 - 10 with 10 being the absolute worst pain you can imagine and 1 being the least pain. I could tell him where I was on that scale when trying to communicate to him my pain. As well this works in determining my days. I have good days ....1-2.... (however those have been few and far between since I am still awaiting getting on any drugs for RA because I haven't seen my Rheumatologist yet) ....... and I have sort of medium days ....5-6.... and I have bad days .....7-8.... and I have had REALLY bad days ......10! So, this scale works for us. Also, there were a few times when I felt that Kenny was getting short changed marrying someone with RA. I felt like he would be better off marrying someone that was vibrantly healthy and didn't have to deal with the pain of RA and the uncertainty that I face with RA now and in my future. It was during this time that I wrote him a very long letter and explained to him completely my feelings on how bad RA could get and how it could indeed affect our life together. I wanted him to be wholly and completely aware of what possibly could lie ahead of us so that he could make a decision that he would not regret possibly somewhere down the line. I love Kenny so much that I really wanted him to know beyond a shadow of a doubt what could happen with RA in our future. I know that I could never be happy if I thought I was making him unhappy in any way and this includes health. Also, I too deserve to be happy, and not ever feel guilty for my infirmity of which I never asked for, but could not help. I have RA and when Kenny and I marry I will still have RA, this was not going to change. Either we were to face that together and move forward together knowing this, or we were going to be doomed to failure by ignoring what could be a very troubling health issue. Love covers all is never true when it is in ignorance. Also in my letter to Kenny, I made sure and left him an easy out so that he could bow out of our relationship without feeling too much guilt, he didn't ask for this RA anymore than I did. This all was very important for me to do in order to clarify to myself and for both of us so that we could move forward or not, which ever he decided. I made sure to state that I would not blame him in any way if he chose to end the engagement just as I promised I would never ask him this question ever again after I received his long thought through answer. I was going to keep my word too, so help me. So, I wrote Kenny the letter and was very very pleased and happy when I got his honest response. He told me that not only did he want to stay with me, but that he would support me through this RA 100% of the way. Also, he thought we should move our wedding date up in order for us to go ahead and get together and live together so that he could start taking care of me right away. He said that he knew my Mother and my daughters could take care of me, but that no one could take as good of care of me as he could. I, was thrilled, and have done my best to hold up my part of the deal by not doubting him and his decision anymore. Now our wedding date is March 22, 2002, instead of May 2002. I could not be happier, he is the man that I have hoped and prayed for all of my life. Oh yes, you also didn't indicate your age or anything, not that it especially matters, but I am 44 and my Kenny is 43.

As far as how a spouse can help you and support you, first is to take an honest, objective look at the man you are engaged to. Does he believe that the woman should do all the house work, raise the children, cook all the meals? If he is this type of man, then you may have a problem. Is he compassionate? Is he sensitive to your needs? How about when you have been sick like with the flu or with a bad cold ... does he tend to pamper you or does he just sort of say "Sorry, you're feeling bad, what's for supper?" Really you have to look honestly and closely at what type of a man he is. Is he a genuine giver? This may be difficult to do for you are emotionally attached to him already and really looking at these types of things can be really hard. But you should do them, for it is in these areas that you will need help on your bad days, when you are not 100% and when you are having a lot of pain. Also, there may come a time when you are unable to work for a while, and that while may turn out to be for a very long time, so how would he feel about this? Honestly now, these issues are extremely important.

I hope I helped you somewhat. If you want to talk further, just email me anytime. I would be most happy to help in anyway that I can. Good luck and God Bless you and your fiancee. 
-Lynn

My boyfriend of one year left me shortly after my diagnosis of RA March 2001. We broke up end of April, got back in mid to late May, (slept with me one last time) and did a 360 early June and left for good! I am still heartbroken and it is January 2002. Most of my friends are married and I really don't have friends who are single to go out with to clubs/bars. I am still depresseed at the age of 25! I'm glad I am physically better but I am still heartbroken because everything was PERFECT with my EX before I got RA. I just don't understand why he left. He claims he thought he loved me. It took RA for him to realize this? He also in early July told me he had a new girlfriend who he loves from his past. I do know his girlfriend is real through the grapevine. How could he move on so easily?
Living Strong With RA,
ANN 

Got a relationship comment?

I'm 24 years old and I was diagnosed with RA in Feb. 2001. Thankfully it was caught in time that I don't have any joint deformities showing up on x-rays yet.The doctor seems to think that we can prevent this from happening. The only main problem that I'm having on a daily basis is that my hands will swell at night when I'm asleep. It usually takes until after lunch time and sometimes even longer before the swelling goes down and the pain stops. Does anyone have any suggestions on how I can prevent this? Any help would be greatly appreciated

I was diagnosed with RA in March 2000.  I understand what you mean about having swollen hands in the morning.  The first thing that came to my mind when I read your story is what medications are you taking??  I talked to my rheumatologist, and some of the things that helped me were increasing my dose of methotrexate, low dose prednisone, and also adding Enbrel.  Hope this helps, Shari

I've had RA for 14 years and what I do every morning upon wakening is put my hands under very warm running water to help get them moving. I gently open and close my hands under the warm water. I do this often during the day or, I use a heat sack to warm them. This works the best for me. Also, try some soaking if you have time during lunch or in the evening in some epsom salts and and witch hazel in warm water this is a good soak for your sore hands. Try some aromatherapy as well. I love to experiment in this field...it is very interesting, fun, smells wonderful, and can help you feel good emotionally and physically! some of my favorite oils to use are lavender - for almost everything and anything, geranium for improving spirit and circulation (especially cold feet/hands), eucalyptus for steam inhalation and muscle pain, and chamomile for calming the nerves and soothing and reducing inflammation of all kinds! Good luck. MAUREEN

When working, I had the swollen hand problem constantly. I did several things which made a major difference. First I got a "comfort" keyboard to use at work and home to change the positioning of my wrists. The next was talk to my rheumy and get referred to Hand Therapy clinic a couple of times a week. This included the parrafin bath, hand massage and just general tips on how to take care of my hands. They also custom made a set of night splints so my hands and fingers were held in the appropriate position instead of the clench I slept with. I also bought a paraffin bath for my home. I couldn't afford the professional model but found one at Sams Wholesale for $50. I have also seen one at Walgreens this Christmas season for $50 which has a heat setting and varied scented waxes. Between the TLC and the heat for my hands, I managed to keep working for another two years before other problems set in. I hope these ideas give you some much needed relief. -Melanie

Swollen Hands, how do you deal with it?

I just discovered I am pregnant and found there isn't much info on fibromyalgia and pregnancy. I'd love to hear others' experiences.

Being pregnant will zap your energy. Fibromyalgia will often completely
drain your energy. My advice? Rest, rest, rest and stretch, stretch,
stretch. Each morning when I was pregnant I would do stretches to wake my muscles up for what lay ahead. I would go to work. At lunch time I would do stretches to ease my muscles. I would go back to work. After dinner, I would do stretches to relax my muscles for sleeping. Several times during the day I would just lean back in my chair and close my eyes and rest for fifteen minutes. AND - you are just gonna have to learn to say, "No." No, I can't bake three dozen cookies for the office party; No, I can't "run over" and watch your kids while you go shopping. Just let people know you're energy levels are on standby and you have no stamina left. This is a time to pamper yourself and prepare yourself for when the baby arrives. Good luck. -DeeTee

Any other Fribro Mama's out there?

Because I can no longer reach up,I have to keep dishes,drinking glasses and cups,ect.on the kitchen counters which takes up working space in my small kitchen.I would like to know how other Arthritics organize their small kitchens.The question is:How to organize a small kitchen for an arthritics?

I had to make a couple of trips to the dollar store but you can fix that
kitchen to manage by yourself. One thing that will help are cup hooks along the back of the cabinets on the wall. You can hang cups, utensils or anything that will hang for easy access. I bought a caddy for utensils and silverware so I can get to things easily on the cabinet. You can also get a dish rack (wooden or plastic) for plates, bowels, etc. I use large cups with handles for soups and things cause I can hold onto them better than regular bowls and these will hang on those hooks. My desire is to have pegboard stuff put up along the back wall of my counters so I can hang everything but that is still a wish at this point. Oh, one more thing is rolling racks in your cabinets. I can't bend down but can reach up so the racks will help a great deal when having to fish for something knee height in the lower cabinets. Good luck, and hope some of this helps. -Melanie

Kitchen Help?

Could you please ask a question regarding lack of appetite? Some of us really do have trouble eating when we are not feeling well and it is an RA symptom as well. There is hardly any information in your site on this topic.
Thanks!

I don't think your alone with your appetite problems. I too when I am too tired, too much in pain have trouble eating. If I remember to take my pain medications I do a little better. 
I am far from underweight, but, we all know that most of our medications need food to protect our stomach's. Any clues from anyone else I 'd be grateful to hear. -Toni

YES! I have appetite problems with pain. I lost 40 lbs. when I had the shingles earlier this year. Guess this is not all bad as I needed to lose. Seems as soon as any type of pain becomes more than I can handle, I get nauseated and lose my appetite. Depression makes me eat, but I have found that pain surpasses all the miracle diets out there. -Linda                             

I used to have very low appetite. Then I started taking an antidepressant called Remeron. It increased my appetite substantially. I gained about 10 pounds from Remeron. Earlier this year, I had to take prednisone for a severe flare. I immediately gained 5 pounds, and have gained another 5 since. I'm not at all underweight anymore, and for the first time am wondering how to stop gaining.
Remeron is a great drug for those of us skinny people with arthritis.
Anti-depressants also help reduce pain. -Janet

Anyone else with appetite problems?

I was wondering whether anyone else has used chelation, & with what results? This fall my husband (74) began treatments for angina due to arterial plaque, and the chelation doctor suggested (to answer my question) that I might try it. I have had about 12 treatments of EDTA, the basic injection to remove metals and impurities and 6 treatments of DMSO, the smelly stuff that helps circulation. I have found that both help somewhat, i.e., I have been able to postpone Synvisc shots (the second round of which didn't seem to help too much) & have considerably less pain for the week or so after the injection. My problem (besides cost -- not covered by insurance) is that I can't tolerate the full strength injection of either. Anyone else?

I am very interested in learning more about chelation. I have researched several sites about chelation. I would like to talk to someone who has had this done. I have RA and OA and heart disease. The statements say that the chelation is good for all of my conditions. -Rickey

Chelation anyone?

Has anyone ever had to have a SSDI review? What do they do? Will I lose my benefits?

Can anyone reassure her?

How do you deal with the constant onslaught of unwanted advice? You know, the 'you wouldn't be sick if you didn't take so many pills' 'My Aunt cured her arthritis by eating lemons everyday', etc. Sometimes they never seem to shut up.

LOLOL!!!!

What a great time for this topic!

My baby sissy got married last Saturday, and my two crazy aunts <one from each side of the family> managed to get me in a corner and do that pitiful "How are you doing?" They can make it sound like they've got a shovel in their car trunks and are ready to bury me on the spot. <BG>

Here's my new response <but *only* for the most offensive> :

Well, ya know, Aunt Joanne, Lupus is fatal..... I guess I'll just try to live right and go whenever God takes me.

Please remember, this was said merely to freak out my 2 crazy aunts - I
do NOT mean it. God will have to take me kicking and screaming. <BG>

Smooches,
Laura - who is also tired of being asked why I haven't married...... :P :P :P

Otherwise the wedding was wonderful, my baby sissy looked like a princess, and there wasn't even a temporary "bridal" disaster. :) :) :)

When it comes to specific cures - I just tell them their cure would
interfere with my Remicaid, which is pretty much keeping me alive right
now.

That'll shut 'em up, although I do prefer the more dramatic version. <eg>  -Laura

Unwanted advice? I follow what others have said: I am friendly, say "Thanks, I'll check into it." And forget whatever they told me! It sure does seem like everyone is an expert! -CS

Now much depends upon whom is giving it. If it is someone of an acquaintance nature, I just say, oh, really and quite promptly forget whatever it is that they are telling me.

Now if it is someone really close, I try to explain that (if I think it indeed deserves merit), I will ask my doctor about that first. That way I have told them (hopefully kindly) that I do see a specialist in arthritis and that not all the stuff people tout is able to be mixed with medications.

My co-workers have asked on a couple of occurances, and if I feel they are sincere, I use it as an opportunity to educate about arthrits. Otherwise just ignore the advice. Toni

I have been told all kinds of ways to "cure" my rheumatoid arthritis.
I have been told to use WD-40 on my joints, ( might be great if I
drilled holes in them and then squirted it in) eat raisins soaked in
wine, my boss got so mad at me when I laughed at her about the raisins
that I thought she was going to fire me. That is what I usually do when
someone says to me that they have a cure for me. I try not to do it in
their face but some are so ridiculous that it is hard not to. I guess
we all have to realize that they all are trying to help us but if they
had to listen to all we have been told they would get tired of it too.
I got so tired of hearing you are too young to have arthritis that I
could have pulled my hair out because obviously I was not because I had
it. I guess all I can do is try to act like I am listening and go on
from there. Thanks, Sherry

Ewww! We've all had unwanted advice. How do you deal with it?