Hello there! Happy New Year!
I’m trying to understand how long it has taken others to find the “right med” for your PsA. I have been on methotrexate, sulfasalizine (sp?), 5 months on Humira, two months on Simponi, and 10 weeks on Enbrel. In March it will mark my two year anniversary of my PsA diagnosis and I am no closer to finding relief than when first diagnosed. I’m not trying to around like a downer, but I would like some perspective and like to know how long it took for you to find your right med.
I am in a new place having moved from overseas and not happy with the team of doctors that are working with me. I’ve got a good lead and will have a new primary care by mid-January and will send a new rheumatologist then. My current rheumatologist proudly proclaimed that “I did some research on PsA over the weekend. I don’t see any psoriasis on you!” I have had it on my scalp since I was 15yo. That comment alone worried me (and many other occurrences). So back to the drawing board.
Other medical issues are making it difficult-- found out before starting Enbrel that I had latent turburculosis, rheumy said he thinks I have fibromyalgia but won’t take the time to diagnose me (he keeps telling me next time) but pain doctor put me on Lyrica anyways, high blood pressure, menopause, prediabetic, migraines, major lumbar and cervical spine issues, insomnia, anemic, etc. I know I’m not alone in having multi-ailments (that is common for us PsA-ers), but possibly is my medication from all these other things interfering with my biologics? Am I nuts to think this could be the case? Who can help me figure this out? The doctors don’t communicate well with each other.
I didn’t mean to rant, just tired of trying to feel better and worry I am wearing my husband out – he is very supportive-- I just hate to impose so much. How many meds did you experience before finding the right one?
Thank you for reading and I am so thankful for this group!
I asked in your other discussion if you take a statin for high cholesterol–I see here you mentioned you have high blood pressure…I had to go off statins because they caused me so much unusual pain in my neck and legs.
From your other discussion plus this one I can really understand why you’re not too impressed with your rheumy.
Last year I was exposed to tuberculosis so had the chest x-ray & blood test just in case. I don’t have it but the little bit of research I did at the time suggested that treating TB as well as PsA could be somewhat tricky. I’d imagine that careful coordination is required as well as really good communication both between medical teams and with the patient. It doesn’t sound as if that is happening. And as you’re on meds for other conditions too the picture must indeed be fairly complex.
There has to be a way of getting an overview. Some sort of case / meds review between practitioners. I’ve heard of this happening and I’m wondering whether anyone here knows how to make it happen. In your shoes that would be my priority I think.
Looking at the list, I suspect that some symptoms could be due to PsA alone, e.g. insomnia and anaemia. There’s such a thing as ‘anaemia of chronic disease’ which I had for some time, though I believe it is typically mild. Mine resolved once I started Humira.
Many of us are wary of a fibro diagnosis because it’s just so hard to tell the difference between uncontrolled PsA and fibro. But there are also many who do have fibro alongside PsA. And again, you so need to know, to have some clarity.
Managing PsA (and especially self-managing fibro which is absolutely vital) is always quite hard enough without the confusion you’re experiencing. I’m totally with you about needing your diagnoses and meds untangled. But meanwhile, keeping moving regularly, sustainably, (sometimes painfully too unfortunately) is THE best thing you can do to diminish and cope with pain. Is that something you’re able to do?
I responded well to my first medicine, Sulfasalazine, but it took me 18 mos to get on the right combination of medicines so that I could do something more than work five days a week and be down the whole weekend. Now I am on the Sulfasalizine twice a day, Prestiq once a day, Depakote once a day, and Meloxicam and Cyclobenzaprine at night. I take Zanaflex 1 mg and Fioracet prn when I feel a headache coming on. All are working well when taken together.
Thank you, Sybil! You nailed my concerns on the head I have now switched to Cosentyx (300mg) and MXT (15mg), and have finally finished four months of antibiotics treating the tuberculosis. Maybe this will all come together and be ok. I have also switched primary care doctors and have started with anti-depressants. This doctor is on the ball and hopefully will act as team leader. With digital capabilities these days there is no reason why doctors cannot work together better it seems (to me anyways). Hope all is well with you. Thanks for your thoughtful reply.
I have now switched to Cosentyx (300mg) and MXT (15mg), and have finally finished four months of antibiotics treating the tuberculosis. Maybe this will all come together and be ok. I have also switched primary care doctors and have started with anti-depressants. This doctor is on the ball and hopefully will act as team leader. With digital capabilities these days there is no reason why doctors cannot work together better it seems (to me anyways). Hope all is well with you. Thanks for your thoughtful reply.