inflammation on hydroxychloroquine and 5mg of prednisolone

[Morepasta]

hello,

I saw my rheumatologist today after complaining about my painful hands and wrists. The doctor mentioned that I don’t show any signs of inflammation on my hands or anywhere else. The reason I am confused is because I have been on hydroxychloroquine and prednisolone since September of last year. Enough time for the hydroxychloroquine to start working. I was under the impression that these were to help with inflammation.

The other part that has me confused is that originally when I was on no medication my ANA was a weak positive and after having it tested again in February this year (5months into hydroxychloroquine and steroids) it has come back negative.

The doctor ordered an X-ray of my hands, wrists and feet to check for any inflammation that might be on the inside and also mentioned getting an ultrasound and some chest tests (routine).

I did mention that I have been diagnosed by a doctor privately after having numerous tests and moved over to the nhs for treatment (mainly mycophenalate as recommended by the private doctor) but since being on the nhs all that’s happened is repeat blood tests and a lot of doubt that I even have scleroderma. She mentioned that I should consider getting another opinion if I’m not happy with the outcome.

I’m not really sure what I should do at this point. If I should ask to come off hydroxychloroquine to get a better picture (I’m nearly completely tapered off steroids now).

In terms of my hands they may not appear swollen but they seem to consistently have a dull ache (like toothache in the bones) and my wrists have gone very weak and achey too. I’ve had to start using stress balls because gripping them actually relieves some of the pain.

I’m wondering if anyone has had a similar experience or has any suggestions on what I should do? Or if I should just not do anything

[Kwenda]

Be aware that hydroxychloroquine does have some very serious side effects for some people and the drug has been withdrawn in some countries.

In the worst case there can be serious damage to the tendons.

Just Google hydroxychloroquine and tendons.

Take Care

Dick

Raynauds since 2023.

[soul22]

Hi

Never heard damage tendons on hydroxychlorquine

I'm on since 2009 it works at cellular level reducing bad auto immune antibodies.

Hence it comes under discease modifying treatment.

Tendon damage isn't hydroxychlorquine alone it's when take certain antibiotics with it

My Dr makes sure I take it not same time antibiotics I'm fine.

That's from multiple rheumatologist consultant.

Oh dear sorry hear re care x-rays scans sound good

You can still get bone pain no inflammation visible,I do .

Watch how I use joints occupational therapy have me aids adaptions .

I have lupus rheumatoid arthritis fibromyalgia osteoarthritis polymyagia rheumatica Raynaud's anti phospholipids syndrome.

Nice to meet you

[Teargarden1990 in reply to soul22]

May I ask which antibiotics? I’ve had this happen to me recently

[StriatedCaracara]

I posted this on the Lupus UK forum.

Bloods can improve and even become negative, then when people stop hydroxychloroquine they flare and they are positive again.

The idea is not to stop them:

healthunlocked.com/lupusuk/...

I had to go private for my UCTD diagnosis. Strong positive ANA and dozen symptoms was not enough to get help on local NHS. Needed specific immunological tests to be positive too. Based on bloods told I did not have CTD as walked into the office. Before discussing symptoms or being examined.

Think NHS using negative or reversed bloods to reduce caseloads. In the past I'm not sure they did this.

[Pippa222]

Hi - I feel exactly the same way as yourself. I was diagnosed with sclerdoerma but likewise only after initiating the process privately and then passing it back to the NHS. My ANA was high positive when tested privately but bloods always seem OK through NHS. I haven't received treatment for the scleroderma at all. My hands likewise give me a lot of bother - they swell in the mornings then generally feel like they ache especially at the joints - I have osteoarthritis in them also which is clearly visible. I get the same ache in most of my joints all of the time that you describe. Again, so far no treatment at all for anything other than nifedipine for bad raynauds but I had to get another private appointment myself to even get that. From what I see and read there seems to be a vast difference in the care that some people get compared to others depending on who is treating you. The whole thing just baffles me and I too wonder about the diagnosis all of the time. To be honest I just think it's such a complex disease that the knowledge isn't out there to deal with it and it seems to be the luck of the draw whether or not you get someone who knows enough about it. If you feel something isn't right and it is bothering you enough it is maybe worth getting the second opinion because in my experience the not knowing and the waiting around and the worrying is more stressful than the disease itself, or you just need to be more pushy - If you don't instigate things yourself I think you can just end up going round in circles and waiting around forever. Good luck and hopefully you can find the answers you are looking for ❤️