Hello,
I have been diagnosed with UCTD and synovitis in both hands and I’m currently on prednisone 20mg Plaquenil 200mg 2x, Savella 50mg, Gabapentin 400mg. With all that my Crp and esr are both at 41 and I’m still in pain and very fatigued. I’ve been on these meds since May 2024. I’ve also changed my whole diet. Any suggestions on what can help me get out of pain and give me more energy?
Hi Jadaboo4,
I also have UCTD, though have never been one to have much pain so I may not be the best person for advice. I do know that when there is marked inflammation in the joints rheumatologists are concerned about damage. You are on a moderate amount of prednisone, which makes me think that is the case with you.
The fatigue is not surprising with your high level of inflammation. When is your next appointment? You should be clear with your rheumatologist exactly what you are unable to do because of joint pain and fatigue.
They will want to taper your steroids. But you are not yet doing well. Fortunately rheumatologists have a lot in their arsenal when it comes to the arthritis drugs. You may go on methotrexate and eventually a biologic to get the inflammation down.
Do you have lupus symptoms like photosensitivity? If so, strict avoidance of sun is one of the most important things you can do.
Try not to get discouraged. I know it is hard. Some drugs like Plaquenil take a while to work.
Best of luck
Kay
Hi Kay and thank you for the response. I see my Rheumatologist on the 13th so I will express to her how I’m feeling and see if we can try something else. If I’m in the sun it drains me even more and before the Plaquenil I was getting red rash on cheeks and nose but it doesn’t come as often.
Trying not to get discouraged but it is rough. Thank you again!
Sounds like the sun causes flares. That may be contributing to the fatigue. Some of us have to be super sun protective.
There are good hats with veils that really keep the sun off the face. If you swim, get a swimming head cover.
The new products are life transforming for me. It is much easier to enjoy summer activities with the clothing, hats, cover ups.
And don’t forget sun screen made for your eyes and lips.
I echo the sun thing! I wear factor 50 even indoors if I’m near windows, which is most of the time in a house!
Sleep is also incredibly important for reducing inflammation. Women need more sleep than men as they get older and people with autoimmune diseases need more sleep. When I started focusing on sleep a bit more, i did start to improve and now I can really feel when I haven’t slept enough in terms of pain and breathlessness. Diet helped too but it sounds like you’re already doing that!
The other thing is that May wasn’t very long ago. Steroids should be quite quick but other medicines take a while to work, so some of it may be patience. I just have hydroxychloroquine but it was a good few months before I started semi functioning and a few years in, i’m having less flares and more time is non-flare than before.
Thank you for your help! I will try all those things. I don’t get as much sleep because I’m a slide sleeper and my legs starts hurting so I have to shift from side to side but I will take more naps during the day and see if that helps. I know they do say that they take long to work but I thought I would feel a little better. I guess I have to just be patient and pace myself. For my hands I try to alternate between ice and heat. That helps for a little. Thank you again and well wishes to you!
It only partially helps, but I’ve just bought a knee pillow! My hips still hurt but not as much. I also find ibuprofen at bedtime helps but that comes with side effects so I only do it when desperate! Hope you start to feel better soon x
Okay I will try the pillow too. I’m just still shocked at how one day you can be perfectly fine and then to multiple things wrong at one time. It’s crazy and hard to accept
I think they say Hydroxychloroquine (Plaquenil) takes at least around 3 months to show improvement, so it might you need to give it a little longer. I remember when I started, some people told me it took a little longer for them to notice a difference, so don't be too disheartened just yet. I know it's hard when you're in pain and feel dreadful, though.
I'd agree with what others said about the sun too. I find it makes me feel very weak quite quickly, so try to keep my sunscreen topped up if I'm out and about. I find the mist sprays are very convenient for quick top-ups, especially facial ones (I like La Roche Posay). I have also found wearing sunglasses with UV protection all the time I'm out of the house does help reduce the weakness/fatigue a little, even inside shops/places like hospitals, as the indoor lighting can also cause problems.
I'm diagnosed with UCTD too, but my inflammatory markers are never raised despite my hands being absolute agony almost all the time (especially my left wrist/thumb and I'm right-handed). My blood tests have generally been most unhelpful, as they keep changing. I've been on Hydroxychloroquine for about 9 months and have only really noticed lessened night sweats and fewer rashes in the sun so far, but they do say it's supposed to slow the progression of the disease so it's possibly doing more than we realise. We know how difficult the process is, so best of luck to you xx
Negative ANA, Positive DS-DNA, Elevated CRP-HS and low white blood cells
Hip pains and cracking
Really scared
lupus and hemangioma on spine
