I have had great difficulty with the side effects of RA medications
I am allergic to preservatives. Problems with medications: Raw mouth - bleeding
Canker sores in my mouth and cold sores on lips. Stomatitis
Drooling – couldn’t stop it.
Bad Acid Reflux – I couldn’t drink or eat anything cold. It hurt too much to swallow. Taking medication or eating was a chore. GERD I don’t have normally.
Medication to stop acid reflux; made me constipated. Maybe the RA medication made me constipated but this medication did not help.
I never once went to the bathroom without an enema. All the laxatives and anything you gave me did not work.
I went off a couple of the medications because my mouth hurt too much and I was in too much pain but not arthritic pain.
I felt very sick and very shaky. I couldn’t stop shaking especially if I were trying to walk.
I needed help dressing, getting in and out of bed or out of a chair. Had very little ability to walk. I used a cane and then switched to crutches.
Gradually, the swelling went down and so did the pain from RA and my strength came back gradually. The RA medication was helping the swelling and pain but the side effects caused me great pain.
I lost 20 lbs. Always exhausted and I’ve lost most of my hair.
My digestive tract is now working again but I had to eat a very high fibre breakfast and 3 Tbls of mineral oil every three days. Now it is working fine. I have been off medication for a couple of months and am now having a flare-up. I had taken Methotrexate, Leflunomide, Defamethaszse, and Prednisone. They made me sick.
My Rheumatologist just gave me PMS-Sulfasalazine that I have started today. Has anyone had these problems and how were they solved?
Hi,
!
I am so sorry your situation has turned pretty complex, medically speaking. Managing RA without the use of conventional medications can be such a challenge, but we do have some members who have had similar experiences to yours and find a way to make things work. I am not sure I know of another member of this community that is allergic to preservatives, but some have definitely been allergic (or become allergic) to RA medications. Here's one member's story -- https://rheumatoidarthritis.net/stories/pain-management-without-biologics. I will say that it's not all that unusual to come across a community member that has had an allergic reaction to one RA medication, but it's pretty rare to come across an individual that is allergic to almost all medications (or, more accurately, the preservatives used in certain medications). So, you will find people here who can relate to your situation, to a point.
And, if we're strictly talking side effects, well, then you're in good company here! You know that medications to treat RA can be pretty powerful and they can come with pretty powerful side effects. I would hazard to guess that most of our community members have experienced some unpleasant side effects while seeking the best treatment for their RA symptoms. Here's just one of many stories on the topic of medication side effects -- https://rheumatoidarthritis.net/living/infusion-side-effect-concerns. Are you hoping to find treatment options that don't involve conventional medications? Are you also allergic to food and supplement preservatives? I only ask because some of our members have tried dietary changes, with varying levels of success. But, I don't want to suggest something that's not what you're looking for.
And, last but not least, I hope PMS-Sulfasalazine is a good fit for you and keeps your digestive system in good working order.
Keep us posted on how you're doing, if you feel comfortable doing so! And may you start feeling a little bit better each day!
Best, Erin, RheumatoidArthritis.net Team Member.
Campbellclan2,
I'm so sorry you have battled with so many side effects. We've all had side effects from medications, and yours are severe. I am hopeful that you will tolerate PMS-sulfasalazine.
As we are unique, it takes time to find a medication fit. Using DMARDs and biologics slow or prevent some of the joint damage that RA can cause.
Hoping that you will gain relief soon.
Mary Sophia, RheumatoidArthritis.net Team MemberSounds very nasty! I eat lots of blackberries, baked beans, and also, sometimes, spicy - but not too spicy - food, and (so far) meds haven't caused me to bung up.
I now know that it was the acid reflux medication that caused the constipation. The medication caused the acid reflux. I am now off those. I also know that I need to eat a full fibre breakfast that includes fruit, nuts and seeds. I also take 3 tables every three days of medical mineral oil. Because mineral oil depletes vit A and D I also take more of these than I was before I took the mineral oil. This works for me. I am not having any trouble with Sulfasakazine having any side effects that trouble me. So for now I am just having the effects of the RA such as swollen hands and fingers, unaligned teeth and hearing loss in my right ear. I am hopeful that this medication will do the trick. It might take a while though. Thank you for the replys. I wasn't sure if it was as bad as I thought it was as I didn't have anyone else who had these problems I could compare it to.
What a relief! It's so refreshing to hear that things have turned around for you. It's hard sometimes to hear stories of others' experiences as RA brings such a different and unique experience for everyone. As for your RA symptoms with your hands and fingers, here is an article that may be helpful to help you manage those pains- https://rheumatoidarthritis.net/symptoms/hand-pain-swelling-and-inflammation. I hope you continue to see progress and success with taking Sulfasakazine. Please keep us updated on your journey and if you have any other questions feel free to reach out! All the best, Latoya (Team Member)
