Advice for Better Living Archives

My Dr. wants to put me on Remicade. I am allergic to Embrel and the other drugs have not worked for me! I am currently on Methotrexate, Prednisone and Arava! I can survive on these drugs, but not to the point of being able to work! I have small veins, with a tendency to blow out and my question is has anyone else with similar problems been on Remicade? If so, did they have problems with the infusion?

Remicade--make sure your blood pressure is monitored during the infusion. my first infusion went ok; 10 minutes into the second infusion my BP went to 220 and all sort of pains-was rushed to cardiac care--damaged my heart a bit--have extra beats. later found out after calls to the manufacturer and nat'l institute of health, that remicade can lower or raise your BP, my reaction,per the nih was caused by too fast an infusion rate. went back to rheumatologist and questioned him, found out hthe first infusion raised my BP to 180 asked him why he increased the second infusion rate, especially since my BP went to 180 on the first infusion--got a wimpy answer--"...it's standard practice.."

most people do ok with remicade, i seem to have problems with most of the dmards

just watch the BP

good luck
vince m

 

Yikes! Who else has bad veins?

I have a friend who takes Enbrel daily. She would like to travel from Atlanta, GA to Dublin, Ireland- her home. Her medication must be refrigerated and kept at 40 degrees. Do they make an insulated container or something that could keep her medication at 40 degress so she could travel throughout Ireland without worry?

Please advise ASAP.
Thanks!
Suzanne

Dear Suzanne,
Yes I use Enbrel and have for a year and a half enliven makes(igloo) a 12"by10" special leak proof ice carry case for your shots. I got mine from
Immunexx ,Seattle Washington for becoming a member of enbrel program.
They sent this to me free. I have mine and you are welcome to use it I can put around 10 shots in ,pack it full of ice and use a refer thermometer to keep 40 degrees.e mail me a address or something ,it folds down to a large mail envelope and I'll be happy to let you use it send it back when your done. I'm not going anywhere for quite awhile, good luck

Rod Pullin

Hi,
I have traveled with Enbrel, even to Hawaii and Ireland. I used a small insulated cooler. I started the trip with an icepack. During a long layover, I got ice at McDonald's. On the plane I asked the flight attendant for fresh ice as needed. Remember to put the ice in a ziplock bag. I also put the Enbrel in a separate ziplock bag to keep it dry. My only problem was at the last hotel I stayed at in Ireland, the staff froze my last dose. (There was no fridge in the room.) Good Luck!

Carol 

8/22/01
I would like to hear from anyone how to cope with the Sjogrens part of my RA? What should I do or take for it and not do? Also I am waiting to be put on Enbrele and wonder what the experience of others has been with it? On my mind has been a recent family reunion and the odd reactions to my illness by some close relatives, any input? I was diagnosed early this year so have many questions! Thank You, Della

Hi Della,

I was diagnosed with RA almost 3 years ago, and with 'probable' Sjogrens
last year. My worst part of the Sjogrens has been dry mouth, so I keep a
supply of sugar free hard candy on hand. Lemon drops work especially well. I find that when dry mouth acts up I start to drink a lot of water and then I wake up every hour to pee. The lack of sleep causes increased pain, which causes grouchiness, etc etc. The other suggestions I was given were to use a cool mist humidifier at night in the bedroom and to use moisturizing eye drops and saline nasal spray - all of which have helped at time.

I've been on methotrexate since the RA diagnosis, and Enbrel for the past
year. Once I did it a couple of times, the injections haven't been a
bother. In fact, this summer we went on a 3 week trip in our little camping
trailer, and the Enbrel came along! I've switched to injectable
methotrexate as well. I'm also on folic acid, Relafen, Celexa and
Amitriptaline. I did try Arava for awhile - it was great for my RA, but I
had side effects that I just couldn't take so I reluctantly stopped taking
it.

As for the family reunion - just be yourself. If people offer strange and
wonderful 'miracle cures', just smile, nod, say thanks, and then ignore what they told you! If you don't have the energy to mingle, find a nice place to sit and relax, and let people come to you.

Good luck

Beth

Hi Della,
Hope you are feeling better today. I really don't know much about Sjorgrens disease. My first cousin has it and she said the worst problems she has had was with severly dry mucous membranes. Her doctor prescribed some drops for her eyes and something for dry mouth. I think she may use a special shampoo also. She said these meds had really helped. She and I are the only ones in our family (from way down the line) that have autoimmune diseases. I am 59 and have had RA for 30 years. I am presently on Enbrel injections twice weekly. I do better on a combination of meds which is the Enbrel, Methotrexate, Folic Acid, and Celebrex. These meds have made all the difference in my life and ability to function "normally." The enbrel injections are easy to administer. I got a kit through the mail which included a video that explained all about it. The main thing to remember is "cleanliness" when cleaning the site area whether it be your thigh, arm, or stomach. Also pay special attention to cleaning the vile bottle top and the needle with the alcohol pads provided. I always wash my hands with soap and water before I even start. The most reactions I have read about from Enbrel were infections at the inj. site. I have given my own injections many times and it is very easy. The needle is very small and you only feel a tiny stick. My husband is the shot giver though in our family as he has had the most experience. I have never had any reactions. I have been on Enbrel for 2 years in September. Enbrel for me was the real "turning point." I am now able to do things I haven't been able to do most of my life!!! I love to garden and be outside with my husband Mike. We live in the country and have cows and plenty of room to roam. I now can take care of my own house and yard!! 
Della, if you have other questions feel free to e-mail me any time. I am now a retired person and enjoying every minute of it!! I am a State retiree with over 20 years service. 
Let me hear from you.
Linda (my nickname on AI is Dancey)


Della, I forgot you were having a family reunion coming up and you sounded a little nervous about seeing everyone after being diagnosed with RA. The main thing is "be yourself." You will probably get all kinds of "family remedies" and comments on how to help with your RA. I have been all through this. The most outrageous suggestion I think I had ever gotten was when I was told that they had a cure in Mexico and I should go there!!LOL Another one is "oh your so young to have this!" Also, "you look so good!" All I can say is be yourself and take the comments in stride. They only mean to help. So many people just don't understand this disease and I finally just quit trying to explain except for my closest friends and family. Go to the reunion and have a good time. 
Later, 
Linda

Sjorgen's Anyone?

8/22/01
I was diagnosed with OA in my right in 1998 by an Orthopedist and have had 3 Arthroscopic surgeries on this knee in one year. I had Right Tibia Osteotomy surgery done on this knee in Sept. of 2000.

I have since started going to another Orthopedist for back pain and was told I had Arthritis in my lower spine....do not know if it is OA or not but assume it is since this is what I have in my right knee.

On top of the OA I have been diagnosed with Carpal Tunnel in my left hand and will be going for a nerve test on both hands in Aug. of 2001.

I have asked both my primary doctor and my Ortho.doctor if I should be seeing a Rheumetologist also and they say no. Should I?

I have a lawyer handling a dissabiity case for me now due to all of this
and I'm not able to work.

I've lived with RA for 26 years. Used Meds from Mexico but after my wife sent me to a Rheumy, I felt like I had been reborn. I was having a hard time getting out of chairs and lots of pain before seeing the Doc. The Doc started me on the proper MEDS and in two days I was able to play volley ball with the neighbors-----Praise the lord.    PLEASE see a professional that knows the disease, it could allow you to have a more fulfilled life.  -Bronco            

>Hi I am living with fibromyalgia and my rheumy told me that carpall tunnel is also linked to fibro. It might be worth while to check it out .Good luck and dont quit.-TT

Tough question! Should she see a rheumy?

8/17/01

Hi my name is Michelle,

I am 33 years old and have just been diagnosed with nerve compression, spinal arthritis, and degenerative disc disease. Since I was little I have always felt some pain in my shoulders and neck. Sometimes the muscles in my neck would give out and I couldn't lift my head off my shoulder. As my life progressed so did my neck pain, my back pain, then my arms. For 3 years I have underwent an excruciating amount of pain. I have went for so long without releif that my thinking was becoming clouded. I just want an end to my pain. Or at least to be in control of it. I really don't like when my pain get's real bad my thoughts race ahead of me, will I always have this amount of pain, Will I ever be able to do simple things like vacume without hurting badly for the next week. My parents don't understand and they think I am having marital problems. I told them of the amount of pain but they don't seem to understand. Lately I have found a doctor who has helped me. I am on drug therapy and soon to start physical therapy.(Again for the 3rd time) My medications aren't working but I am afraid to ask for something different because I really don't want more pain releivers but right now I can't even take care of my family and work without something, also what if the doctors think I'm becoming addicted. What happens also if you do become addicted. I'm scared of all the different scenarios. Can someone please give me a light at the end of this tunnel.

Thank you and God Bless

Hi Michelle,
I have the Spinal Osteo Arthritis and also Fibromyalgia and probably other things they havent uncovered yet LOL

Not much you can do to avoid pain.. but one is get on Celebrex or something like that for the inflammation.. no matter what they say Doctors cannot eleviate all the pain. just being truthful here. on a scale from 1 to 10 . I sit at 8 most often all the time. good days I can type, and garden in spurts and household chores can wait.. I have my priorities LOL.

I also take Flexeril for the muscle spasms you have or will have. it keeps me walking and moving.. I take Darvocet for pain.. and I use a good chiropractor once a month. Rick uses Acupressure to help with the Fibromyalgia , it cause my spine on each side to have nerve bundles like and this acupressure ,it does hurt but only for a few seconds but then it relaxes the nerves and I am feeling good!! just had it done today as a matter of fact.. Osteo had pushed my hip out of place a bit so he put it back in and did our little work on the body and as good as new..

I am 49 was diagnosed in Jan 97 with Fibromylgia and the Osteo I have had since 92 really bad and I have a degenerative disc Number L5 sometimes I can walk sometimes I can't I have a cane I use when I have to.. dont be afraid to use one better then sitting all the time and being bored to death or tears...Under water excersise is great for us if you can get to the places that offer it..

Hope to hear your doing better!

Carol from Mishawaka Indiana

Michelle, first thing you really need to know is that you are not alone.
My family except for my spouse did not have a clue to how much pain my RA could cause. Ive had RA for 22 years but until deformities became dramatic about 4 years ago in my hands everyone thought that since I looked okay then I must feel okay. When my hands finally broke down before I had surgery on them, the first time my brothers saw them they practically went into shock. They realized for the first time that the pain must be unbearable at times to cause such an extreme deformity. This is after 18 years of dealing with it. I never made a point of talking about the pain either. I was one of those farm kids that was raised to tough it out and not complain.

Until my surgeries 2 years ago I had never been given anything to help with the pain. Hot water, ice packs, aspirin and tylenol was it except
for one time when I threw my back out and one flare in 1990 that also required my first cortisone shot to get it under control. Since my surgeries I have been taking oxycontin and it changed my life. I was actually unaware of how much pain I was dealing with each day until I
took something that actually relieved it. My energy levels and my
ability to think and work rose dramatically.

You didn't say what kind of pain medication you are on but it doesn't
sound like its working very well. Please let your RD know this and also
let her/him know that you have to get the pain under control so you can live your life. You may have to try a few different things before
finding something that works without side effects like drowsiness. For
me it has been time-released oxycontin. If your doctor is unwilling to
work with you on this then I believe you have to find one that will. As
for addiction, there is a world of difference between addiction and
dependence. I am dependent on a certain amount of oxycontin to keep me relatively pain free. That is not addiction. I do not take extra doses
to get high. In fact since starting Enbrel a month ago I have been able
to reduce my intake of pain meds by nearly half. I will continue to
reduce as much as I can. There is no issue of withdrawal but with a lot
of meds you have to reduce slowly to avoid any kind of rebound effect. I have so much damage in other joints that I will probably always be on
some amount of pain medication. My RD understands this and works with me to make sure I'm taking enough. She does not believe anyone should have to live in chronic pain and nobody should.

There is a light at the end of the tunnel. You can get some of your life
back if your doctor will work with you on finding the right medication.
You will have to be pro-active and assertive about this issue. For some
reason in this country we have created a culture of fear about taking
medication for pain. Search and read all you can about this issue. When you talk to your doctor do not be afraid to suggest something that you feel might work. You deserve to have a life that is not filled with chronic pain.

Good luck to you and please keep us informed as to how you are doing.
~johnie

Dear Michelle, my heart goes out to you. I have been in terrible pain every day since I was a small child. I was dignosed with fibromyalgia and they didn't pursue any other diseases. I believe I know exactly where you are coming from. My family did not believe me,nor the doctors or my husband. The pain was so severe and happened overnight when I first got it - my husband had to roll me over to get me out of bed. I ended up in phys. therapy for a year, could not think or function. No DR. understood the pain-it could not be measured! It drove me to drinking all day and all night to knock myself out to go to sleep. I have the greatest sympathy for you. I KNOW the pain rules your every thought, it still does with me. Unfortunately, I had to spend thousands of dollars out of pocket, even tho WE had great coverage thru Chrysler. Sadly , my husband passed away 4 yrs ago with aggresive cancer. So now ,I am 50 yrs old ,on nacotics, and a whole pharmacy of pills. BUT, I am hardheaded enough to fight the pain,and I find Icebags(colpac brand) the best to releive the pain for 20 mins. andI walk back and forth a lot to move my joints. I find a lot of comfort in praying, being on line, and tending to my 2 cats. I also think I have ankylosing spondylitis. Still waiting for the doc to figure out the rest. Take a break as often as you need it-I do . I sit up to sleep in bed or the couch. I also find that if I take my night time dose of pills ,it is easier to do some cleaning, Also ,after I needed stronger meds, I had to go to a physco doctor who specializes in chronic pain. If , i can be a support buddy, Please write to me! Most importantly, you do NOT get addicted- you get immune to the drugs. I pray that your family and husband will understand some day soon!!If you are depressed, please get anti-depressants! Don't think your crazy,cause you are not. God bless,Michele 
a.k.a. as The Old Broad !!!!!!!!Hugs to you

Any more suggestions for Michelle?

8/17/01

I have been diagnosed with osteoarthritis in April of this year. It all started with a bad fall. The doctor said it wasn't the fall, that it would have occurred at sometime. I was prescribed a fairly new drug called VIOXX. I also took quinnies, or the pharmacy sells as quinine. It helped the restless legs but did nothing for the pain in the hips and legs. The drug also killed my immune system. I began getting spots all over my body and tiny blood spots and a lot of bruising. I notified the doctor who in turn sent me directly to emergency hospital where I was given a solution intravenously called ICIG. They the doctors did a history on me and had never had anyone have such a reverse reaction to the drug. That was in April 2001. I was taken off any pain medication or anti-inflammatory drugs. I am in terrible pain in my lower back and I can only walk for a short period of time.

I was wondering if anyone knows anything about acupuncture? I am at a loss.

Acupuncture is good until you reach a plateau, then it can do no more.

I am researching the effects of Reflexology on arthritis, and would like to
hear from anyone who has had this treatment, as I have heard that great
things have been achieved through reflexology. It is no good having one or two treatments though; you must agree a timescale and course length with your therapist to gain any benefit. -Kate

My name is Marla and I have ad RA for about 3 years now. When I first got sick with it the doctors were reluctant to give me any pain meds because my liver enzymes were high. That left me fending for myself. I saw my cousin for the first time in many years and found out he was a licenced accupuncturist and he said he would treat me. I went to him for about 5 months and there was alot of improvement. My energy level went up dramatically and very gradually the pain level went down. After i stopped seeing him I eventually went to a doctor and am now on celebrex, but my arthritis is very mild, I think, I can do most of the things I did before this staarted, even ride my horses, although if I overdo it I have to deal with the pain. I am very grateful for the accupuncture. Maybe sometimes people get too involved in the pain meds and dont give their bodies a chance to heal. -Marla

I have osteoarthritis in my low back area (facet joints).  I tried acupuncture and the first day I was convinced it stopped the pain for one day.  But each time I went back it seemed to help less.  After about three weeks, it didn't seem like it helped at all and wasn't worth the trouble.  It's not meant to treat chronic pain. -Amanda

Acupuncture anyone?