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Sjogrens Topics => Living With Sjogren's => Topic started by: Deb 27 on March 25, 2021, 08:29:19 AM

Title: Immunosuppressives during a pandemic. How are you doing?
Post by: Deb 27 on March 25, 2021, 08:29:19 AM
I was just curious how people on some of the stronger meds are doing during the pandemic. I had to stop taking plaquenil because of side effects and I am going to need another medication. I am an anxious person anyway but I would be so afraid to be on them right now. I am sure it's unfounded but that's me!!! I think methotrexate is my next go to drug. My rheumy mentioned it before. None of these drugs are without side effects, that's for sure and I am the side effect queen.
Title: Re: Immunosuppressives during a pandemic. How are you doing?
Post by: Robi5 on April 07, 2021, 11:44:21 AM
Many times I saw this post and I thought someone more experienced than me would give a better answer.

But, I think this is a fear I have too.  I also had to stop taking HCQ at end of January because of side-effect, which then required 6 weeks of prednisone to counteract that.  I also find I?m king of side-effects.  I?ve been off work in that time, but I feel pressure from the company to come back asap.

From my understanding, the worst of the bunch for suppressing the immune system as it relates to covid is Prednisone, particularly higher doses.  The others seem to be ok once you are vaccinated.  Getting my first shot today. 

My GP gave me a bit of a hard time as to why I wasn?t back to work when I was taking Prednisone.  She seemed to infer that HCQ is the one that suppresses the immune system, but Prednisone wasn?t, so I should have been working.  Seemed strange a doctor wouldn?t know that.  But I suppose this is more a Specialists domain.  Hard to find any sympathetic GPs in my town. Thankfully my Rheumy is awesome.

The drug my rheumy wants to put me on is Azathioprine.  Still not sure what to do, as it can increase risk of cancer, much worse GI issues (than even HCQ which was hard to tolerate on that front), hairloss, and messed up blood count .  HCQ was fantastic in that it didn?t compromise my immune system and still got rid of all other debilitating side-effects like chronic fatigue and joint pain.
Title: Re: Immunosuppressives during a pandemic. How are you doing?
Post by: meirish on April 08, 2021, 12:03:45 AM
Hi, Sorry to hear that you had reactions to hydroxy. I am another of those that has side effects from many drugs plus allergies to many. I have been on prednisone for many years. I had to start taking it in 2005 for issues related to Sjogrens and then in 2006 was diagnosed with Myasthenia graves, Hashimotos and severely low t-cells. I was diagnosed with Bullous Pemphigoid as skin autoimmune disease in 2002 and then with Sjogrens in 2003. In 2016 I was diagnosed with autoimmune hearing loss and had 2 antibodies killing my hearing. I had lost my hearing totally in my right ear in 1997 but there was no testing for autoimmune ear disease until the last few years.

 I take the prednisone for my myasthenia graves. MY neurologist puts all her MG patients on this as a hedge to give us time to get to the hospital in case we would have a myasthenia crisis. This occurs when our diaphragm muscles become paralyzed and we have respiratory arrest and need to be on a ventilator for usually 2 weeks or more. This autoimmune disease is one of the oldest AID to be discovered and didn't have much treatment until the past few decades. There were quite a few people that would have fatal respiratory arrests and now days it is much much less.

Now, I have been on methotrexate and cellcept and those drugs are quite tolerable to take. However, I had to quit them as I have had the low t-cells plus some other low IgG levels and I have had a ton of infections over the years plus am high risk for infections. When you are to start the Imuran...easier to spell than the generic name, one has to consider that the first doses are a test dose to see if your body tolerates it. I was one of those who can't take it. It is not an allergy but the way our body is chemically. If you can't take it you usually will get nauseated. The doctor then had me try again a few weeks later and I again got very nauseated. I have a son with bad autoimmune disease and he can't take it either.

I don't know what dose of prednisone you were on for those weeks, but I would guess that you were on a taper dose. I had worked when I was on my prednisone. At the time I took 10 mgm every other day and then the past 10 years or so I am on 10 mgm one day and 7 mgm the other alternating. I am one of those who has not been able to get off the prednisone and back to my 10 mgm every other day. I am 78 years old now and had to quit work when I was 60 and still wasn't diagnosed with Sjogrens or the 3 other AID.

I have learned to be much less fearful over the years about drugs. I just let doctors know that I am very drug sensitive and generally they are understanding and often we start me out on a lower dose to work our way up. I have never been able to take high doses of prednisone when on tapers. Thirty mgm is the highest I can go and then taper down. Ww all just have to do what we have to do. I was put on IVIG back in 2006 for my myasthenia and am still on it. High dose every month for all those years and now going to every 6 weeks.

I hope that you can get on something that will make you more comfortable. Take care and keep us updated on how you are doing. meirish
Title: Re: Immunosuppressives during a pandemic. How are you doing?
Post by: Robi5 on April 08, 2021, 11:00:04 AM
Thank you Irish.  I’m sure Deb 27 will also find it very helpfull.

Thank you for the information on Imuran.  I think that gives me some peace knowing that I’ll start of on a test dose.

With Prednesone, it was actually a 14day X 25mg, and then a 4 week taper down.  I did well on it and actually it made me feel really good and energetic.

Just got my first Moderna shot yesterday (we’re a bit behind in Canada because of supply constraints, we’re at 70years or older older right now, and in my early 40s I got a letter sent from the health authority to let me get it as a high risk), and had a hard time sleeping because of joint pain.  No meds for 3 weeks now, and I talk to my Rheumy next week about where to go next.  My possible unrealistic hope is that I can go med-less for some months, but I’m more open to the idea of trying Imuran after what you said.

Thanks so much for all the helpful information!
Title: Re: Immunosuppressives during a pandemic. How are you doing?
Post by: meirish on April 08, 2021, 02:03:53 PM
Just to let you know that the doctor may not call the first dose of Imuran a test dose as if you don't get ill they just let you finish up the dosing. Not everyone gets sick from the drug and those who can tolerate it seem to do well on it. meirish
Title: Re: Immunosuppressives during a pandemic. How are you doing?
Post by: Robi5 on April 08, 2021, 04:28:41 PM
Okay, I’ll keep that in mind...thanks so much!