Alright, just back from the RD. I told him I wanted off the enbrel for an assortment of reasons and that the only ones I would feel comfy taking now are sulfaslizine and plaquenil.
He said studies have shown that it doesn't work!! I BEG to differ!!! at 10 pr 11 years old I went on that, when I couldn't sit on my knees because they wouldn't bend that far, couldn't turn my head from side to side, my wrists didn't move etc. and I gained almost full range of motion back! I can sit on my knees completely, my wrists are better and my neck is better. (also had PT) but how can he tell me it doesn't work! I also went into "remission" after that! Damn this doctor ticks me off.
So I have a choice between MTX and sulfa. I have no clue what to do.
Hi Christina, I understand your frustration so well. I take MTX and Plaq. and have improved a great deal. I'm not sure if it's one or the other or both that are doing the job. I wish I could give you a good answer as to what to do. I personally am nervous about long term MTX use and would like to go off it and try Lyrica in its place but I'll bet my RD won't want me to do that either. We're kind of stuck in a way. They have more experience than we do and it's so hard to know when to listen to them and when to kick them to the curb. Others here will probably give you some good advice you can use. Hang in there.Christina,
Sorry the doc said that. I started on only Plaquenil in 2004 when I was first diagnosed. That was the only DMARD I was on for several years and it worked well during that time. Actually, I was doing really well so my RD decided I should try to cut the Plaquenil dosage in half. That was what caused my flares again. I guess I gave the RA an inch and I feel like it took a mile!
I tried Sulfasalazine and couldn't tolerate the abdominal discomfort. It wasn't a good choice for me. I started MTX last July. It isn't working either.
Sorry sorry kweenb that youre meds aren't working. I hope something works out for you SOON. I wish I could take this post to my RD and say I told you so!
I am def not going to try the MTX. I am weird about side effects. I REALLY need to get a second opinion. He hasn't even taken xrays to see my damage. Just blood work.First day he saw me he wanted to put me on enbrel with out knowing anything. He says he can feel the inflamation. ACtually he wouldn't even see me today. He sent the PA. Couldn't be bothered I guess. They weren't even busy. but yet she had timeto go talk to him for 20 minutes but he couldn't come see me. BS. I am so changing RDs
(she didn't even know what minocycline was, I had to tell her what was in it, and still didn't ring a bell)
Didn't know what Minocycline was? Eek. That would scare me away for a second opinion too.
I opted for the Sulfasalazine first since it seemed the safest. Too bad that didn't work for me. I was really afraid of the side effects of MTX too. My RD started me on a low dose of 7.5 mg. I didn't have any side effects at all until I reached the 12.5 mg. Once I hit that dosage, I felt really tired that night and next day. I also once had some abdominal problems, but found that taking the wonderful advice of the veterans on this board and eating a high carb meal the night I took the MTX did the trick.
Hope you find something that works and an RD you feel confident with.
We got the same story - from a doctor who had already rx'd it!!! What is up??? The first time around, it was a mild drug with a long history. Now, he says there are studies that show it doesn't work any better than a placebo.
He said studies have shown that it doesn't work!! [/QUOTE]
Could you ask him to provide the sources of the studies? Where Suzanne has already done a search without success I would like to have the author's names and credentials so I could obtain copies for my own edification.
After all, I have been taking Plaquenil on and off for at least a decade and have always found it to be effective. IF it is simply a placebo effect then I should be able to duplicate it without "drugs".
Con brio! Happ
Garbage I tell you. Doctors can't tbe that stupid.
You know my hubby just told me that his dads insurance told him they were going to drop him if he didn't take BP meds. I plan on telling my RD that I am not taking MTX or whatever else he wants me to take. I am going to find a second opinion. Do you think they will report me to the insurance?? She was pretty adament about getting me on a drug, even said she was going to call me in a week if I didn't call her back.
I think BP meds would prevent life-threatening conditions, plus dx'ing high BP is a no-brainer. If you can't control you BP without meds, it is the insurance cos. best interest to get you on meds.so i'm on plaq, and sulfa, and i just started mtx a few weeks ago....my rd (who i love and is amazing) put it to me this way...
there are different levels of drugs...plaq then sulfa (lower) then mtx. and some other drugs i can't remember now (mediums) and then you have embril, humera (sorry about the spelling) (as your higher)she thinks its better to start with the mediums because the disease works hard and fast and its better to nip it in the butt if you can.
i wanted to start low and work my way up...so we started me on plaq and i didn't feel much of a diff in my joints however my fatigue improved dramatically. i don't weigh a lot so i'm only on 200mg but for most people they can be 400mg. so then we added sulfa which still improved things but my rd wasn't happy and i'm still getting miniflares and a lot of swelling so we just added mtx.
personally i think you should get a second oppinion and deffinatly ask to look at the studies and information he is because you have a right to know, and as your doctor he should share it with you...this is YOUR life, not just his paycheck!
sorry about the rant...good luck with it and i hope you start to feel better soon!
Im on Plaq and it has worked pretty well for me and when i dont have it boy can I tall. I would so go get another opinion its your body you know what works for you. I hope that everything works out for you.[QUOTE=Suzanne]Did you know Plaquenil is used to treat alopecia? I do now. Next time I see a post about somebody's luscious hair on mtx, I'm getting the rest of the story...they are on Plaq, too!
[/QUOTE]
Oh, man! That was not the case for me. When I started taking Plaq, my hair started falling out big time! I called my RD crying, sobbing, barely understandable and they took me off it right away. She said it caused alopecia.
Now I'm on the MTX/Enbrel cocktail and I still notice hair loss but not quite to the extent of when I was on Plaquenil. It's still concerning to see so much go down the drain in the shower and strands falling out during the day. i am on MTX and Plaquenil and my hair has really done well - its the plaquenil? I was given plaquenil not for RA or lupus, but for the leg cramps I was having, which I now know were being caused by my undiagnosed osteoporosis. So when I started on the osteo drug, I asked the rheumy if I could stop the Plaquenil now that we had the leg cramps under control, and he said no. And he had to be forced to prescribe it in the first place. Magic, doctors believe in magic. since i have been on plaq, all of my acne cleared up. i love it. i have no side
effects and have taken it on an empty stomach a few times lately with no
problems. the only problem, is a very low grade yeast infection. You guys are so lucky. Losing as much hair as I did while I was on it totally freaked me out. Even when my mane is fro-ing out, I still couldn't imagine it completely not being there. I wouldn't wish it on my worst enemy!Mrs, I have lost lots of hair and I'm not sure if it is from plaq or the disease
process itself. I tried the Nioxin shampoo for a year or so and it was a huge
waste of money.(for me anyway) I know they are using Aldactone now for
hair loss. Have not heard how successful it is though.
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Plaquenil has worked very well for my daughter and she is only on half the dose that is usually prescribed. I have not noticed that she has had any hair loss from it though. Really sorry that happened to everyone that lost their hair on it, and I really appreciate you guys mentioning that so I can watch
Between sulfasalzine and mtx?? Sulfa is a combo of salicylate (the main ingredient in aspirin) and a sulfa antibiotic. MTX is a chemotherapy drug which we use in much smaller amounts. Both are considered to be a DMARD. I guess it comes down to what you want to put into your body. Then I guess you also have a choice if one doesn’t work you can always try the other.
I encourage you to get a 2nd opinion if you really feel that your doctor isn’t listening to you, working with you, or is not looking out for your best interests. I really don’t think your doc will report you to your insurance though. With your FIL, the high blood pressure is really life threatening and can cause all sorts of really bad things to happen to him. That is most likely why the insurance company is saying that he has to be on something. People don’t realize that insurance is really set up for people that are well…not for people like us that are sick.
Please keep us update on what you decide to do!!
I took plaquenil for 6 months and it never helped me. Then we moved on to sulfasalazine and found out I was allergic. I had a reaction to MTX, put on humira and broke out in hives. Dr. suggested taking benedryl with the shot and for a few days after, no more hives. Took humira for over 8 months and still have morning stiffness for at least two hours, swelling, and the ra is progressing. Now I am waiting to see if I can get some financial aid to try enbrel. Since dx in Sept 05, I haven't had too many good days. Humidity, heat, and cold all bother me and I sleep (when I can finally fall asleep after taking flexeril) I sleep for 10 to 12 hours. Last Sat. my hubby woke me at 2pm. I had slept for 14 hours. That's my experience but everyone is different and respond to meds differently. I do have many allergies to begin with and benedryl is always in my med chest.
Best wishes
Cindee, I'm very sorry that you are having a difficult time with this disease.Hi Lorster, I haven't tried rituxan or remicade. Dr did say if enbrel doesn't work, remicade will be next. I forgot to mention the AP therapy, I was on that for 4 or 6 months (can't remember) and I was flaring big time all through it. Which people here on this site said I was hexing or something like that and I didn't give it long enough. My ra has been real aggressive so I felt like humira was my next step up. SO now we'll see. I was always the person to be that little percentange that gets weird things. Like with the epidural Ihad with daughter, you have a 1 or 3% change of developing side effects. I went into convulsions, was numb from neck down, and had a head ache for 3 weeks that was so awful. I went to dr and he took blood from my arm and injected into my back where the epidural had went in. Instant relief. Also nyquil makes me hyper and dayquil makes me sleep. I'm just weird, so, if you are going by my experiences, please don't because Iam not the norm.
PS>>>sorry didn't mean to take over post. Please pardon me.
I may be stating the obvious here...but when I told my the PA I didn't want to go on MTX because of hair loss, she said they tell the patients to take folic acid everyday and that seems to help. That's true Christina. The Folic Acid helps combat the side effects. I've noticed a little more "shedding" of my hair, but it isn't noticable to anyone else. I wonder if the Folic Acid would work with Plaquinil. What dose do you take?I don't take it. I am not on any meds right now. She sugested it and didn't tell me the dosage. If I end up doing it, I will let you know. I did see somethings online that says they do use plaq for alopecia. So confusing!I think I'd say something like "humor me and prescribe plaquinel...if it doesnt work I will tell the world you are right." otherwise.. ask your PCP to prescribe it.. my pcp started me on it to see if as a test case it would help before I even met my rd.
drs forget they work for US.. not the other way around. ideally it should be collaborative but when it gets down to it you are the one who knows your body the best.
I have only been taking it a short time, and maybe it's just coincidence, but the last couple of days I have felt ten times better than I have in months. Less pain, more energy, and that overall "blah" feeling is gone. And no negative side effects so far.
I've noticed more than usual hair loss when showering, brushing, etc., but that started before the Plaquenil.. I think in my case anyway, it's related to the RA and not the med.
I've taken all of the medications you've mentioned and I've done very well on all of them. The very first DMARD I was on was Sulfersalizine and it worked well for a while. Eventually I had to change to plaquinel and I was doing so well on that for a long time that I (Despite my doctors warnings) stopped the medication completely. Didn't think I needed anything (I think we all have to go through that phase)
Eventually the doctor proved to be right and I began to have problems again. Worse this time by far. This time I started MTX and have been on it ever since. It's been a wonderful drug for me and I can't tell that I've had any hair loss. The first year or so I really had a down day the day after MTX but after a while I actually looked forward to those days as my day of rest. Now I occationally take a Sunday afternoon nap; but it's not required....just desired.
I now take 25mg and manage very well. We have friends here that have be on MTX without problems for more than 15 years. I think it really depends on the person. SO many of us take it without problems and it really makes a huge difference for us. I am a huge fan of MTX despite the scary things you've read.
If you however are getting along (simi-ok) without anything I'd suggest giving Sulfersalizine a shot. You have very little to loose. All of these meds take a little time to work. Rarely do any of them work over night but in time you might just find you do really well on what's considered one of the weaker DMARDS.
Good Luck.
Oh; PS: I really think I'd look for a new RD. Never in all of my 13 years with this has an RD sent in a PA to meet with me at one of my scheduled appointments. You deserve to be seen by the doctor each and every time you go in. Now if this is a last minute appointment and all they have available is a PA appointment that's one thing; but to wait months and to end up being brushed off on a PA? That's just wrong. Forget about the fact I don't like what he's telling you about the meds and jumping right in and giving you Enbrel.....his lack of attention to you personally would totally turn me off. At least give some thought to another doctor. This is a long term relationship. Do you want this sort of treatment long term? I wouldn't.
I agree with Lovie, just wanted to offer my support.
Pardon me if someone already asked this, but do you suppose the RD just didn't think it would work for you because you have moderate/severe RA and after being on Enbrel, it would be like just giving you nothing? Not defending this guy at all, just wondering.
No, because I don't I have moderate to severe RA. Thats why I was mad at him in the first place for putting me on enbrel. I have a very mild case. I have managed for years with out meds. Just some morning stiffness and the occasional sore joint. The only reason I went to him was to prevent damage after my knee had been acting up, so I think enbrel was a hasty decision on his part. I know he is trying to prevent the damage too, but there are a lot less expensive and milder drugs that I can take to do that. At least I think so.
christina, that really sucks! i cant believe your dr totally ignored your wishes. i agree with you get a second opinion! i mean if you dont know your own body who does?!? i know drs are smart and educated and a bag of chips, but they arent psychic and they cant KNOW how YOU feel! thats the drawback! only the patient really understands their symptoms. i am on plaquenil now, and it has made my stomach hurt so bad i just curl up the fetal position and feel like ugh! it is kind of a confusing drug, if you look at the side effects and the treatments all drugs can be confusing. if you know it works for you, then i'd either press your dr or try another one! i really hope you find some comfort! i am still hanging out wth plaq waiting for it to work for me!Thanks Erica. Yeah it made me pretty mad. Especially when I told him I didn't want to be on enbrel and that I would give it a try. Well I tried it and Ijust can't do it. So I don't see why they are surprised that I asked to be taken off of it! They new I had MAJOR reservations.
Sorry the plaq is making your stomach hurt so bad! I don't remember that from when I was little. That stinks! Maybe it will go away after you get used to it? Are they having you get your eyes checked? I remember having to do that when I was on it.
Erica, I know what you mean, plaquinel made me sooo sick and made my hair fall out. It was much worse than MTX for me. Many people have no problems at all with it.
Good luck on your 2nd opinion Christina.
Welll I guess I am going on Sulfa for now. Until I can find a new RD. Thanks for all the help guys!!! You all are great..I am going through a very rough time right now. My grandpap had a stroke on Tuesday and they are going to take him off life support on Saturday. Can't stop crying. And I found out yesterday my grandma's ovarian cancer is back. Life sucks so bad right now.
You all helped me to think through something I don't think I could have worked out on my own right now.
Wow, that's rough. I'm so sorry about your Grandfather. Oh Christina. I'm so sorry to hear about your grandfather and grandmother. My thoughts and prayers are with you and your family.thanks gimp and kweenbI'm so sorry for your grandma and grandpa.
Hugs,
Pip
Christina, I'm so sorry about your grandparents. It sounds like they are a very important part of your life. Hugs to all of you.omg cah-i am so sorry! when it rains it pours! sending prayers your way love!Good news!! The residents were wrong when they told my gram to take him off!!!! The head of neurology came in today and said to wait and see. He is not brain dead like they said. He even crossed his legs this morning!! I am going to see him today.
I took my first sulfa pill last night. 500 milligrams. That made my somach feel weird. That doens't look good especially since I only had one and he wants to wean me up to 4 a day.
Oh, yeah!
Pip
That;s great news Cah!