On methotrexate but full of doubts

[Aliaou]

My story begins in 2022.

Second infection with Sars cov-2 and I started experiencing extreme fatigue and pain of my junctions. I had also two episodes of severe anemia but also weight loss.

Since then, I have visited many different rheumatologists each one suggesting a different disease (fibromyalgia was the dominant suggestion) for my case.

However, the most comfortable period for my body and organism was when I was on hydroxychloroquine (+/- prednisone).

Unfortunately, the idea of long covid (and non autoimmunity) but also the fear for the adverse events of hydroxychloroquine made me stop the treatment.

A few months later, the real nightmare begun. Pain all over my body (always symmetrically), stiffness , fatigue, numbness of both arms and hands especially at night, headaches, nausea, mouth cavity ulcers, a mild but persistent rash on my face.

My blood work negative enough with the exception of a low Hct periodically and the ANA title from 1/80 to 1/160 .

There have been more specialists ignoring my despair of that period. Their conclusion was again fibromyalgia.

Four months later, I met a specialist who talked to me about seronegative rheumatoid arthritis.

His suggestion was methotrexate (+/-prednisone).

I really had no other options for a relief.

At the moment, I am running the forth week of injections . My latest blood work shows a great decrease of Hct (anemia) and a high value of Erythrocyte Sedimentation Rate.

In general, I feel much better with my joints and I experience a low grade morning stiffness.

I noticed that methotrexate acts also on my flu-like symptoms (irritated eyes and rhinitis).

I am still not convinced that I am under an autoimmune condition under the influence of a negative blood work.

I am desperate for a diagnosis. So far, my experience says that my symptoms respond to medications used in protocols for autoimmune deseases. I am planning to follow those protocols for as long they offer me a quality of sleep and life.

I am so tired being the in vivo experiment.

I am so tired feeling 'insane'.

Thank you all for reading me.

[StriatedCaracara]

Re: Long covid I found this site useful. My autoimmunity seemed to increase following covid infection.

healthunlocked.com/lupusuk/...

[StriatedCaracara]

Why did you stop hydroxychloroquine?Hydroxychloroquine I found really helped but I still needed to take short courses of steroid twice (in years 1 and 2)

Now in year 3, I take Hydroxychloroquine 300 mg / day average and another antimalarial Mepacrine 50mg three times a week. This antimalarial combo seems to work particularly well. I have not needed steroid recently either.

The link below is to a post saying why hydroxychloroquine is so important. The videos helped me a lot to weigh up pros and cons.

healthunlocked.com/lupusuk/...

[Treetop33 in reply to StriatedCaracara]

Agree. I've been on hydroxy for six years and I've been fine with it. It's the first line treatment really and if it works for you that's great.

Unfortunately at some point one has to accept medication. All medication has benefits and downsides. They do monitor you quite carefully for side effects.

[Aliaou in reply to StriatedCaracara]

Hydroxychloriquine was a great help for me. I just had not realize at that time. I wanted to believe that it was not due to medication effect but due to the end of the long covid phase. A terrible mistake.

[StriatedCaracara]

It is not your fault if none of your doctors explained.

Are you still in touch with the one who prescribed 'hydroxy'- to tell them what happened, and that you want to go back on it?

Hope things start to work out.