Flare or reaction to Leflunomide Dmard

[Warrior4JC]

Hello everyone, I've had diagnosis of PMR & GCA since 2012 (@45) on maintenance steroids and HYXQ since. Rheumatologist did hand ultrasound scan to see if possible RA . Was surprised when told I had, as I hadn't really had probs with hands . She suggested I had and to take MTX and have had a reaction of large bullseye mark on leg so told to stop immediately. Recently gone on LEF and had spasms in legs and headaches (3 days in), so stopped and resumed and two days in woke with pain in my hands as if stung on each finger . Before suggesting I call my RA Nurse there are none on this UK island I live on. Lucky to have video with Specialist 6mths.

It's been 2wks since describing to the Pharmacy Technician on the phone (on the mainland, she said the island population doesn't hit threshold for even a RA Nurse let alone Team when I asked)). She said stop immediately and she'd contact the Consultants secretary to contact me. Not heard anything as yet so called to make apt with GP and managed to get one for Thurs (couple of days).

Meanwhile: Ref photo attached that I've just take - I'd like to know if this is typical flare up of nodules or an allergic reaction, from your experience of RA?

Appreciate feedback!

[KittyJ]

I can’t see any nodules there. Is the white skin usual for you? Do you have circulation problems?

[Warrior4JC in reply to KittyJ]

As you can see the left hand is kind of ok. whilst the right feels like sausages about to burst. The white/yellow is the tightness.

other hand

[KittyJ in reply to Warrior4JC]

Ok, I’ve never had that happen in a flare, hopefully your doctor will be able to help you 🤞🏻

[oldtimer2]

Flares are 'usually' on both sides, remembering that the 'usual' is not 'always'. If only one hand is involved it would be useful to look for alternative reasons. Infection? Bite? Injury?

[Warrior4JC in reply to oldtimer2]

Ok thanks for your response, that's interesting! maybe Dr can shed light on it tomorrow.

[Doryza]

for my hands, sulfasalazine worked well for me, after about 6 weeks of treatment. I started with nodules on one hand, one swollen finger, then the other hand... Collagen also helped me later. Unfortunately, sulfasalazine don't helped me white blood cells were dropping so I quit and went on Medrol and newer Baricitinib. I wish you health and a good doctor!

[Warrior4JC in reply to Doryza]

That is worth knowing and thanks very much for sharing!

[Mostmoses]

Ouch! I also had bad reactions to hydroxychloroquine, methotrexate, and lefleudomide. With me it was serious heart palpitations and massive spike migraines (was hospitalized), but some people just don’t do well on these meds and it’s important to listen to your body on this. I am now on a biologic, which works much better in my case. Don’t hesitate to follow up with your medical team!

[Warrior4JC in reply to Mostmoses]

Thanks for your comments and glad you are on track now.

[BonnieG123]

I was on MTX for two years. I never had a visible or questionable reaction to it. As the dose increased, I felt more and more sick each day. I was working and got to the point where I could hardly get out of bed. I told the rheumatologist that I wanted to stop. She said (and I quote) “it’s up to you.” So I stopped. If you feel it’s the MTX causing your reaction, ask someone in the health industry if they think you should be trying another medication for your diagnosis. Find someone by searching Google and call or text a question to them. Seek out the Mayo Clinic in the US. But continue searching. I wish you all the best.

[Warrior4JC in reply to BonnieG123]

Thanks for your response, await apt with Dr tomorrow.

[BonnieG123 in reply to Warrior4JC]

That is good news! Wishing you positive outcomes!

[Garnacha]

Just a thought, psoriatic arthritis causes sausage fingers and / or in toes, & whilst RA is usually symmetrical psoriatic arthritis isn't. Might be worth mentioning x

[Warrior4JC]

Just took a look at some images and you are right, there is a similarity that may be worth a mention. Thanx

[KittyJ]

How did you get on? Did you get answers and help?