Methotrexate

[Mamalou]

Hi I am new to sjogrens world.  My rheumy decided to try me on methotrexate. Plaquenil was not helping and I have a family history of macular degeneration so they were concerned about me losing my central vision. After the first dose I started itching everywhere.  Dr told me I can't take it again since it was an allergic reaction.  I am still itching. Took some benedryl which helped. Anyone else have this problem?  Anyone know how long the itching and nausea will last? 

I am very discouraged nothing they have tried so far has helped me.  My labs are always normal even when I have inflammation that can be seen.  Lip biopsy was positive for sjogrens and the skin biopsy was positive for discoid lupus.  I got strep 18 months ago and my glands are still swollen and have had a bad headache everyday since then. Everything hurts and the fatigue is overwhelming.  They put in plugs in my eye lids and I reacted to those with inflammation.   Teeth are cracking and have lost 2.   I am on Saligen which is helping with the choking but dims my vision. 

Any advise would be greatly appreciated. Thanks

[finallyadx]

So sorry to hear that you are hurting and discouraged with no end in sight or no suggestions or recommendations as to next steps.

Have you asked the rheumy to try another medication?  I know some rheumies will offer other "off label" meds when plaquenil and/or methotrexate do not work or cause issues.  I am currently taking plaquenil and doing okay on it but it is not a miracle medication for me, I am thinking about asking for a new medication trial in six months when I go back.

Welcome to the forum - sorry you had to find us, but glad you did.  You will find members kind, supportive and informative.  I am hoping others will reply with experiences with other medications to give you ideas as to what you may discuss with your dr next.

Sending positive thoughts your way.

[irish]

You will have to speak to your doctor about some other medications that you can try. There are a lot of them out there now. It depends on the type of relief that you need. It may be that the skin issues demand a different product. There is Cellcept which is being used a lot more with some good luck. Also, Imuran, which needs to be tried slowly. I had severe reaction to that one. The stopped it and waited some days and then restarted it. This time only one pill and I was really nauseated and chills, etc. Felt terrible. That med is out for me now. When people can take this med it usually does a good job. People take it for many years at times.

There are a lot of other medications and I would try to find out the names of some of these drugs and question the doctor individually. If you don't get much help from this doc you may have to find another doctor who will make a concerted effort to find a med that will help you. Good luck. Irish

[Mamalou]

Thanks for the ideas. Rheumy said to go to primary care dr and have them prescribe some cymbalta because she doesn't prescribe medication for fibromyalgia.  She wonders if I have that now too.  It just goes on and on and on!!!!!  Itching has finally stopped but I am so weak and tired.  Was barely able to do Easter dinner for the family and I did as simple as possible.   Still a little nauseated.  Just feel so frustrated.  This was a new rhuemy and I felt like she understood and cared. We only have 2 in our area with 2 PAs in their office too.

Thanks

[meow]

Plaquenil bothers my skin, too. I can only take one a day, instead of the standard 2. I take it with food.

[Carolina]

Dear Mamalou,

It is so unfortunate that those of us with Immune Disorders are also unable to tolerate so many of the medications that are prescribed for us.

I have an Immune Deficiency and need IVIG every four weeks.  I cannot tolerate it (my Immune System rejects it) unless I take Medrol on a regular basis.  I'm fortunate at least that I can tolerate the Medrol.

No one who is 'normal' has the faintest clue what this is like.   Sometimes even our doctors don't get it.

Wishing you the very best.  Perhaps one of the newer biologicals will be tolerated?

Hugs,  Elaine