Life after DMARDS and Biologics

How is life for those of you who have transitioned to no longer being able to take DMARDS and Biologics? So far I'm finding it really rather unsettling as I don't know what to expect and I'm not quite sure how I'm going to manage. I no longer have those hopeful expectations that a drug might 'save' me or at least improve my golf swing. At this point I'm feeling rather more stunned than complete doom-and-gloom as I really did not anticipate reaching this point quite so quickly.

I'm not there yet. BUT I have a plan if I am. My mother had nothing my grandfather had Anacin, and my grandmother had nothing (she made it 103 wth pretty severe PsA granted she was pretty senile and spent much of her day singing protestant Hymns in German we still haven't figured that out She was Catholic and from Irelandall .) They managed. My sister had a crappy attitude and bourbon, she didn't manage.

I have 42 ( at minimum) new treatments in stage II or III trials. I also have a pain management clinic and surgi-center up the block (lots of options there) not to mention several VERY Nasty PT;'s and on deceptivley nice OT (she is the meanest of the Bunch)

I have at this exact moment 23 grand children (+ 4 in the oven,) 4 great grandchildren, 9 children, a wife and huge mortgage, a personal relationship with several IRS revenue Officers (Tax liens from 2008) all of who seem to think I need to keep moving.

Heres the thing Laura, YOU aren't there yet either. From what you have posted here, if you think you are you need either a gentle (or not so gentle) kick in the butt OR a New treatment team/doctor or all of these things. I know you are not a quitter, and I'm not suggesting you are. Just with the meds you have tried there are 144 combinations (not counting dosage adjustments) and I know you haven't tried all 144.

Its half time.My grandfather (the one above) always said we ALL play a better second half. He died at 99 though (honest to God having sex with my grandmother who thought he fell asleep AGAIN) H ewas the first registered Pharmacist in our state He was convinced Anacin would put him out of Business..

TNT LOL - What a true blessing you are!! What would make the Rheumy believe the Biologics/DMARDS are no longer working? All these meds are new to me. Was on MTX (got off right away due to many infections); now Plaquenil and going Monday to discuss starting the Biologic again next week. What physically happens to make them say it is not working? SED rate? CRP? Continuing destruction? Thank you! Hugs, Dee

Dear Laura: We may be sisters in this one if it is any indication of what the MTX did to me... I started (last week) taking Plaquenil because it seemed to be the "safest" drug, and am having panic attacks to begin the Biologic (just because of my body's reaction to the MTX - immunosuppressant). One Rheumy swears I have PsA (with R/A) - the other the opposite (R/A w/o PsA), but like everyone says, it does not matter; treatment is the same. You are not alone. I seem to have the same disposition as you ... have you already tried the Plaquenil? If you do research, it certainly seems to be for people like us with very few complications... The others on here have much more experience than I ... there has been research on using Tetracycline (antibiotic) for R/A with positive results (my friend is doing this) ... Stay positive; I would love to research this with you, as I believe it is where I will be shortly based on past results. Hugs to you, Dee

There is a time an place for bourbon too.

Yes there are non immuno suppresion drugs in testing such as Ibalizumab

Heres some studies: http://www.ncbi.nlm.nih.gov/pubmed/?term=anti-CD4+monoclonal+antibo...

We are not limited to just the anti-CD4 monoclonal antibodies.There are also the injectible anti‐inflammatory cytokines—especially IL‐4 and IL‐10

Hopefully Chris will pop in, Hes on top of this. From what I am reading we are all just a few years away from being off immunosuppresents.

There is always my Grandpas Anacin. he was pretty cippled but he died with a smile (he also owned the liquor store)

TNT - Can we get these injectibles now that you are mentioning? Anything I can talk to the Rheumy about on Monday? Thanks..

Not yet the first is a immunosuppresnt.

Oh Lamb you slay me, of course your Grandpa died with a smile on his face. Just too much! LOL.

And a match made in heaven I am so glad you found each other Laura and Tootles. This road is so much easier with a buddy. I can't believe you both have the same problem! God I love this site......

Sorry to here about your issues with immunosuppression. As already been said, there are drugs in the pipeline that aren’t as immunosuppressive. I am waiting for DMF. Wish I had the money to fly to Germany and purchase it myself.

Laura,

When I was first dx with PsA (1982) there was aspirin in high doses. I took that for a few years. It has to build up to a therapeutic level in your system. I had weekly blood draws to test my levels, until we got to a good place. After the weekly blood draw they would also measure how long it took me to stop bleeding, in case I developed clotting issues.

Eventually more NSAID's came out and I got through most of the next 20 years with very high doses of various NSAID's, such as 2400 mg / ibuprofen /day for 10 years. It wasn't super control, but it did keep the pain and some damage at bay (along with physical therapy, staying active, etc). NSAID's are seen as passé now, with so many blockbuster drugs out there, but it is possible to reach therapeutic levels if that is the only option that works for you.

Gold isn't readily available anymore, and based on what you said, it may be too toxic for you anyway. I had great results with Solganol, an IM injection of gold salts. Injections were given weekly, then biweekly, then monthly. I ended up on a monthly schedule. Before each injection my blood was checked for any toxicity. Most people don't have much response with gold, but it put me into a remission while in my senior year of college, plus 2 more years, which was fantastic.

I hope some of this information helped you. I'm so sorry to hear you are having such troubles with all the immunosuppressants. I tend to get rare / odd side effects to things, so I really empathize with your rare infections.

Laura E D said:

While it is a path not commonly traveled, if anyone has experience with managing PsA + RA without immunosuppression I'd love to hear about it.

1 Like