Question ?

[Damaged]

I have been diagnosed RD for almost two years. I have a terrible history of drug allergies and reactions. I recently saw my dentist who prescribe Clindamycin, for abscess. I am allergic so hives. He referred me to Endodontic Specialist. He insist on surgery or extraction. Problem: I currently have a respiratory infection and severe UTI. Doctor prescribed Cipro..two weeks and still have all three infections. Therefore, I have no interest in oral surgery at this time.

Theory: I believe my immune system is so busy fighting infections it has no time to attack what few healthy cells remain. ! What do you think ?

Now second issue . I was scheduled for Rituxan infusion in June. My Rheumy will be on call then on holiday so I do not meet with her until July. So I had Lisa push infusion back to July. I have been through four DMARD's, Humira, Orencia, will not risk Actemra due to diverticulosis. I am allergic to Naproxen, Sulla, Chlorpromazine, Imitrex, Lefludamide, Clindamycin and Asprin so far..

I am torn. I fear the damage being done to my body by severe RD but thus far drugs have been an absolute ordeal. Perhaps in my case I should just stop. Either way I will discuss goals moving forward with Rheumy. Her I trust completely but as much as I love her am not so sure I want to continue 'treatment'. Would love to know how others who are "drug resistant or difficult RA have achieved remission.

[Hidden]

Hi Damaged. I don't have RD as it turns out, but have Sjögren's Disease - which attacks my nervous system in various ways. But initially I was diagnosed with RD so have tried 4 Dmards and now on a fifth, used for people with connective tissue diseases rather than RD.

I have had allergic reactions all my life, once to a new kitten which gave me anaphylaxis even though most cats I am fine with. Sometimes hair spray, make up or just completely unknown. I had severe allergic reactions to Sulfasalazine, Hydroxichloraquine and Azathioprine. Methotrexate I tolerated up to a point - but finally I just couldn't - and nor could my liver.

I don't have aggressive RD but I suppose my Sjögren's is equally heavy duty since it is attacking my periperal and autonomic nervous system all the time and also my liver and possibly my kidneys now too.

But the difference is that there are many less drugs available to those with Sjögren's and none of them have proved effective so we are more often abandoned to deal with things topically than people with RD are. It tends to be a matter of many specialists dealing with things as and when they arise i.e fire fighting.

I have a thing about compliance so will try everything the various rheumies I've been under have recommended - but always with grave misgivings. The latest has been Sildenafil (Viagra) for my Raynauds - which I have lasted 3 weeks on until nasal congestion became too severe and my face started to swell with Rosacea flare - and then lips too. Having only just recovered from 3rd lot of antibiotics for ENT infections - I decided enough was enough.

I'm tolerating Mycophenolate very well but it's not stopped my neuropathic flares so far - rheumy is waiting for my liver to settle and then I'm to go up to the very top dose of this powerful immunesuppresant. After that there are no options left for me - unless I push for IViG infusions - which no one has mentioned to me at all although mine is an inflammatory neuropathy. Rituximab has been suggested but, with my history of allergies and infections I am not keen. Recent trials for those with primary Sjögren's show it not to be effective anyway.

Instead I've decided to push my GP and rheumy for a referral for allergy testing and haematology input to see if I might have a Mast Cell Activation Disorder perhaps - given my long history of allergic reactions, including anaphylaxis. I'm not sure there are any treatments for MCAD but I'd settle for self managing it if I knew more about my prognosis at least. I'm all for pushing my medical team, including my neurologist, to search for new, targeted treatment options for those with my disease. Have you thought that you might have MCAD I wonder? Might this be worth pursuing at least perhaps?

Meanwhile following this latest reaction to Sildenafil and a series of nasty infections - that the drugs reactions to date are just too scary and make me so unhappy that, if Mycophenolate fails me, then I will probably submit to the fate of most people with Sjögren's. Now of course this may be okay for those who only have mild disease - but for those like us whose disease is very erosive or slippery, then it's a terrible choice. However if I'm given the choice between the devil and the deep blue sea - I am feeling that for me the deep blue sea looks like the better option because at least I can swim! Not much help but you do have my sympathy anyway.

[Damaged in reply to Hidden]

Thank you so much Twitchytoes, I will look into MCAD. My last urine tests came back with Mixed enteric flora. This is thought to be contaminated but I am not so sure. No one has called about repeating test. I do not need test to know the UTI is still raging on.

To many doctors and none are stepping up to deal with it. So, I have decided to do nothing. No surgery, no more antibacterial drugs and no more doctors, for now. If fever spikes or I see blood then will call rheumy. Until then I will give my body a chance to work it out.

Simba sent an article by Dr Cush re difficult RA lol He focused on seronegative but I am seropositive. I do belong to the drug resistant , too late group. However, he did indicate that not responding to drugs maybe a wrong diagnoses. I definitely have RD but as we all know, the disease is not exclusive. I have no doubt there are multiple conditions still undiagnosed. Maybe with three infections my body can no longer respond to drugs? Who knows?

[jhy3]

Hello, I have reacted to many DMARDS & anti-Tnf drugs, including Humira and Enbrel which produced agonising joint inflammation and general septic type symptoms. I had to be treated in hospital twice with steroids. In fact steroids (Prednisolone) are the only drugs which I can take now and I am on a dose of around 12.5mgs daily to keep my RD under control. Unfortunately I have become steroid dependent as my adrenals have given up after 10 years on prednisolone. I am awaiting further tests to see why I need highish doses of steroids as I cannot get the dose down further.

I cannot take NSAIDs because of stomach bleeding and hiatus hernia so they are out.

Hope you can find something your body will accept or maybe you may have to go down the steroid route too 😩

Best wishes

Jane

[Damaged in reply to jhy3]

Naproxen is in all NSAID's and Prednisone makes me crazy. I am allergic to Sulfa but autocorrect changed it to Sulla lol

This is significant as it eliminates more options. But at this point I am afraid of all drugs. It is an endless litany of reactions. So I am initiating another time out. I do feel my immune system is so busy doing what it is intended to do that the RD symptoms while still present are manageable. But it is somehow reassuring to know I am not alone.