Medication questions

[lovemydoggy]

So far my diagnosis has been Palindromic Rheumatism. I get flares that jump around and I always have some degree of fatigue. This is a picture of my latest flare brought on by stress, injury and a flu jab within one week.

I’m on 300mg of hydroxychloroquine a day, which has worked great for the pain and swelling and even fatigue for 4 years. Now not so much. The elbow flare is probably the worst I’ve ever had.

My medication concern is obviously that it’s not working as well or at all. Any immunosuppressant scares me because I catch everything. Always have. That concern is magnified because my elderly mother has Myesthenia Gravis, not doing well and on Imuran and I don’t want to pass any illness to her.

I have an appointment for Thursday to discuss it with my doctors assistant. I find I often get helpful answers from the forums, which is great for before an appointment.

My doctor told me if PR is treated the belief is treatment can slow possible progression to RA. I haven’t seen that anywhere, but 🤷‍♀️

Anyone have improvement increasing dosage of hydroxychloroquine? Is methotrexate or leflenomide (spelling?) the next step?

TIA

[welsh12]

Rheumatology will advise in terms of hydroxychloroquine it's prescribed by weight

[Adorable1]

Hi.

Ah That looks so painful 😣

I’m newly diagnosed with RA and started on 200mg of Hydroxy, after a month have been increased to 400mg but I guess really from me that don’t tell you anything, sorry.

Agree with welsh12 rheumatology will advise.

It’s great to question here as you get feedback that can be helpful too I find, having some knowledge is good when you go to rheumatology as you can sometimes make suggestions and they will say if it’s suitable for you.

Best wishes to you. I do hope your elbow improves very soon

[lovemydoggy in reply to Adorable1]

I’m doing some research and thinking maybe adding something to the hydroxychloroquine could be helpful. Guess I’ll see on Thursday. Thanks for responding.

[Adorable1 in reply to lovemydoggy]

Yes I’ve noticed a few have like hydroxychloroquine and something else.

Good luck

[Neonkittie17]

Looks so painful. I’m sorry you are suffering with this. I don’t know anything really about the palindromic arthritis, sorry. Did you knock/injure that elbow, as could be more injury and less that your med is not working? A blood test could help distinguish if Hydroxy is holding the arthritis back or not. Was it hot and red before the injury?

Not sure what the upper doses are for Hydroxy as not a med I’ve taken. . I know people on here who are on a duo of dmard therapy of Hydroxy plus one other dmard so that can be an option, as can changing to a solo therapy of Mtx or Leflunomide, before biologics are discussed, so I wouldn’t get worried about that.

I hope your doc’s assistant can advise you if they think it’s something the rheumy needs to see, with a view to checking your med is still holding the arthritis and examining your joints. Good luck. 🩷

[lovemydoggy in reply to Neonkittie17]

Palindromic Rheumatism is similar to and often a precursor of RA. The difference is not t bounces around from joint to joint, then resolved without permanent damage to joints. It does look like an injury. Well, I guess my immune system is beating me up. 🤬

[Neonkittie17 in reply to lovemydoggy]

Sorry I misunderstood and thought you meant the elbow you were showing was the injury you referred to. Glad it doesn’t damage joints as RA does.

[AgedCrone]

I was diagnosed with Palindromic rheumatism 20+ years ago…I Yo- Yo’d backwards & forwards for a couple of years. Then I was diagnosed with Sero positive rheumatoid arthritis. Went through most of the DMards ..had most of the ups & downs to be expected…including seven very successful years on Methotrexate.

I caught every cold going before I had RA, but since diagnosis I haven’t had a single cold and when I had Covid, it was only like a bad cold…so not everyone has a bad experience with immunosuppressant drugs.

All I can say is listen to your doctors and if you are fortunate you will be like me 20+ years down the line I am in remission just having Rituximab infusions every 9/12 months.

Good luck..I hope all goes well with you.

[Beviej]

I've had pal for 31 years.I'm on lefludomide now .it has helped me.