Experiences with DMARDS/corticosteroids?

[Seadragon]

Can anyone who has any positive autoimmune markers or other clinical signs or physical manifestations of autoimmunity share your experiences with these types of drugs - corticosteroids and/or DMARDS?

I test consistently positive for ANA, ESR (intermittently positive), Anti Smooth muscle antibodies and Rheumatoid Factor (high positive). I do not have Lupus or Arthritis.

I have a thirty year long complex illness history (many unusual and severe symptoms on top of the usual ME type symptoms) which started about two to three months after a mild but long lasting bout of Glandular Fever (Mono) and six weeks after a minor surgery where I reacted badly to the anaesthesia.

I recently have seen a Rheumatologist who my GP referred me to who believes these types of meds may help me.

A one off 5mg dose of Prednisone last year instantly improved my condition dramatically and the effect lasted several days (at my best the day after I took it) but even after this one off low dose, I was left with what seemed to be steroid withdrawal symptoms a few days later - fortunately this only lasted a day or two but the experience left me nervous and undecided about following his advice to try a longer several month long course of very low dose Prednisone followed, if successful, by the introduction of a DMARD (he didn't specify which one).

I have been in limbo for the last year....too nervous to try the longer course of low dose Pred he wants me to try for fear of steroid withdrawal symptoms (and possibly worse ME symptoms) after the course is over.

Has anyone pursuing this type of route, bypassed the steroids completely and tried a DMARD first?

If so, please share your experiences.

Also any experiences in general with corticosteroids and DMARDS?

I am also more sensitive to side effects of drugs and even supplements these days and also withdrawal effects when coming off drugs so any opinions/experiences with this side of things would also be helpful.

Thanks very much in advance for any input

 

[Thinktank]

Although not exactly in the same situation, my girlfriend was diagnosed with lupus a few years ago. The DMARD hydroxychloroquine (plaquenil) has made all the difference. It's quite a safe medication, some people have been on it for over 20+ years.
The only issue with plaquenil is possible ocular toxicity.

Avoid longterm corticosteroid use at all cost if possible.

 

[Alenka]

Avoid longterm corticosteroid use at all cost if possible.

Could you please explain why?

 

[Thinktank]

Could you please explain why?

Side effects of oral corticosteroids used on a long-term basis (longer than three months) include:

• osteoporosis (fragile bones),
• hypertension (high blood pressure),
• diabetes,
• weight gain,
• increased vulnerability to infection,
• cataracts and glaucoma (eye disorders),
• thinning of the skin,
• bruising easily, and
• muscle weakness.

Other side effects i can think of are loss of libido, hair loss, yellowing of the teeth.

After longterm use of corticosteroids a very slow taper is needed. Your adrenals have been shut down for such a long time that they don't produce hormones anymore. It can take a very long time before the adrenals revert back to their old state.
WIth every drop in dose you risk a flare up of the disease, pain and other nasty problems.

Corticosteroids should be a last resort and only be taken for a short duration.

 

[Seadragon]

@Thinktank Thank you for your input. Yes, these are the exact reasons why I am nervous of longer courses of steroids. I would prefer to try a DMARD if anything, but I am so prone to side effects with new drugs so not sure I could tolerate any of them. I guess it's a case of trial and error....if I could get the nerve up to even try.

I had a horrible experience with benzos a few years ago when I developed terrifying paradoxical effects and had to endure a very traumatic, difficult and long withdrawal process to get off them. Since then, I haven't gone anywhere near new drugs out of fear despite wanting to try new things!

I do feel I could possibly benefit from the right DMARD given that I have these positive autoimmune markers and also some autoimmune and inflammatory symptoms.

I feel that Rituximab could perhaps have been the right fit for me but it's not offered in my area unless you have a clinical diagnosis of Rheumatoid Arthritis.

 

[Seadragon]

@Learner1 @Desertstorm @Cipher @XenForo @Gingergrrl

Hope you don't mind me tagging you folks but I believe you may have had some experience with this type of thing?

Please don't feel obliged to reply but needing to hear others experiences if at all possible at some point. Thanks

 

[Gingergrrl]

@Learner1 @Desertstorm @Cipher @XenForo @Gingergrrl
Hope you don't mind me tagging you folks but I believe you may have had some experience with this type of thing?

I don't mind being tagged but am not actually sure what a "DMARD" is?! I will Google and be back...

I am back and if I am understanding correctly, it looks like DMARDS are for rheumatoid arthritis, but like everything else, they are also prescribed off-label. Is this correct? From the list it showed on Google, I have never taken one, so cannot really comment. I am getting Rituximab (with next infusion in approx two weeks) but it doesn't look like it is a DMARD (vs. a chemo or MAB drug)? It has been incredibly helpful and life-changing for me.

As far as steroids, I have been on Cortef for 3.5 years (initially prescribed to try to help get allergic reactions and anaphylaxis under control) but now I have secondary adrenal insufficiency from Cortef. I am in the process of tapering off of it (a very slow taper that will take over a year, but if I can do it, I will be thrilled). I very much regret starting it but I understand why we did and cannot go back in time.

I have no idea if this helps or answered your questions?!

 

[Moof]

I avoid corticosteroids (at least one of them make me crash very badly), but I take a DMARD for psoriatic arthritis. It's a drug called sulfasalazine, and new users have to have liver function and blood counts monitored regularly for the first year, and then six-monthly thereafter. It works very well and has saved several of my finger joints from complete destruction. I've never had liver problems or abnormal bloods (apparently most people don't), and the only side effects were a mild headache for the first four days. I've been on it for several years.

It is, as its name suggests, a sulfonamide, and it wouldn't be prescribed for anyone highly sensitive to this class of drugs or to aspirin.

More info:

https://www.arthritisresearchuk.org/arthritis-information/drugs/sulfasalazine.aspx

 

[XenForo]

@Learner1 @Desertstorm @Cipher @XenForo @Gingergrrl
...I believe you may have had some experience with this type of thing?

I'm pretty sure sulphasalazine has been helping me for a few years. It just seems to lessen the symptoms. I had to increase the dosage to 1 gram 2x per day before it started helping me. That was a couple years ago.

 

[Moof]

I'm pretty sure sulphasalazine has been helping me for a few years. It just seems to lessen the symptoms.

Interesting – obviously mine wasn't prescribed for ME, but I have been better since I started on it. It may not be connected, but it's a thought.

 

[Thinktank]

As far as steroids, I have been on Cortef for 3.5 years (initially prescribed to try to help get allergic reactions and anaphylaxis under control) but now I have secondary adrenal insufficiency from Cortef. I am in the process of tapering off of it (a very slow taper that will take over a year, but if I can do it, I will be thrilled). I very much regret starting it but I understand why we did and cannot go back in time.

I'm sure you can! It took my gf nearly 2 years to get off 7.5 mg. She had to take it very slow because of increased fatigue with every drop. Just take it very slow and things will be fine.

 

[Thinktank]

I'm pretty sure sulphasalazine has been helping me for a few years. It just seems to lessen the symptoms. I had to increase the dosage to 1 gram 2x per day before it started helping me. That was a couple years ago.

Have you ever tried mesalazine? (without the sulfa).

 

[kelly8]

Hi, i think this info might be helpful... i have been on oral hydrocortisone for almost 8 months now. In my case, at least thus far, it has been life changing. When we were looking into the fatigue the endo Dr said all my tests were normal but my functional medicine Dr was particularly concerned about my cort stim test that i almost passed out after. The values were "normal" but they were no where near ideal.

I was concerned when we started but the idea was to help support my broken system so i could deal with some of the other things we are trying to fix. I took it very cautiously. I took much less than was recommended. I'm taking one 5mg tablet in the am , 1/2 at lunch and a 1/4 at dinner. It took me a while to work up to this dose. When i have flare ups i increase this dose to try and help my body thorough.

I already had a lot of those side effects before starting the medication. They have not gotten worse. What i am on now has helped me considerably. I now can take care of my son and do my part time work without feeling like I'm going to die (unless I'm having a flare up).

During this time I've been reducing stress, working on getting more sleep, doing a gut cleanse to deal with some infections and parasites. Our next step as i understand it is dealing with Lyme and then anti viral treatment for chronic Epstein Barr. My goal then will be to decrease all my steroids. (I have been on skin creams for the last 13 years due to various skin issues that are chronic).

I hope this info helps you. I know this was a major turning point for me in my treatment.

 

[XenForo]

Have you ever tried mesalazine? (without the sulfa).

No. I've never taken it.

However, I had an acth stim test and it seemed to give me a mini stroke like thing; i forget the name.

 

[Gingergrrl]

I'm sure you can! It took my gf nearly 2 years to get off 7.5 mg. She had to take it very slow because of increased fatigue with every drop. Just take it very slow and things will be fine.

Thanks for the encouragement and I am on 15 mg Cortef per day and hoping to complete this taper in 1 to 1.5 years. It is encouraging to hear that your girlfriend was able to do it. In one more week, I will have reduced my daily dose from 15 mg to 13.75 mg and then will re-do blood work for my Endo.

I have already lost about five lbs (but I know this is also b/c I am much more physically active without wheelchair and am sure it is not from this miniscule reduction in Cortef alone)! I still need to lose about 20 more lbs and know it will be a slow process.

I have to reduce the Cortef very slowly to avoid the allergic reactions coming back (which happened in my two prior tapering attempts which I cut to 12.5 mg per day immediately vs. this one in which I am taking seven weeks just to cut to 13.75 mg). So far, I have not had any problems. I have also just stopped IVIG (after doing it for two years), in addition to this long Cortef taper, so I am being very careful not to touch or alter any other factor at this time.

 

[Seadragon]

Thank you all for your input

 

[crypt0cu1t]

I have an elevated ESR and CRP as well as AChR Binding antibodies and salivary protein 1 antibodies. I have been wanting to trial steroids to see if I respond positively which would be a sign of my illness being autoimmune.

The wait for IVIG is killing me since I dont know if autoimmunity is really my issue and if it will help or not.

Does anyone know of a canadian pharmacy where I can purchase prednisone to just try it out?

 

[Gingergrrl]

AChR Binding antibodies and salivary protein 1 antibodies.

The wait for IVIG is killing me since I dont know if autoimmunity is really my issue and if it will help or not.

If you have the MG and Sjogrens autoantibodies, then we know that autoimmunity is an issue for you. We don't know if it is the entire cause of your illness (and we did not know in mine either) but we know it is at least a big part of it, even if you are not a responder to IVIG. There are other treatments for autoimmunity besides IVIG. I believe you will get approved and I know it is so hard waiting. It took me approx four months to initially get approved for IVIG in 2016.

Does anyone know of a canadian pharmacy where I can purchase prednisone to just try it out?

Is your doctor recommending Prednisone or wanting you to wait for the IVIG?

 

[crypt0cu1t]

If you have the MG and Sjogrens autoantibodies, then we know that autoimmunity is an issue for you. We don't know if it is the entire cause of your illness (and we did not know in mine either) but we know it is at least a big part of it, even if you are not a responder to IVIG. There are other treatments for autoimmunity besides IVIG. I believe you will get approved and I know it is so hard waiting. It took me approx four months to initially get approved for IVIG in 2016.



Is your doctor recommending Prednisone or wanting you to wait for the IVIG?

She wants me to wait for IVIG

 

[Gingergrrl]

She wants me to wait for IVIG

I know this is not what you want to hear but I would wait. Prednisone can trigger psychiatric symptoms (in some people, not in everyone of course) and she may want to avoid this. In addition, if you started it right as you were starting IVIG and then either got better or worse, there would be no way to separate what is causing what.