Hi ladies and gents,
have any of you heard of the connection between the blood disorder Polycythemia vera, and its connection to PSA?
I was having problems with fatigue (more than normal), and swollen legs. The haematology and rheumatoid consultants, have now said this condition can be part of PSA!
Has anyone else experienced or heard of this complication?
Thanks in advance for info,
Pete
Please excuse my fascination, I had no idea that it was a PsA complication. I knew it was related to gout, and primarily considered a "Jewish Disease" But it all make sense when I think about it now. One of the treatments as you probably know is interferon. It was the use of interferon that lead to the development of the Biological Drugs that so many of us benefit from.
At one time the other primary treatment was venesection (blood letting), is it still? Do you test your own Hematocrit? In strange coincidence my dads secretary had Polycythemia vera. She with no suprise was always the gallon leader at the Red Cross donation center.
I know there are different forms of Polycythemia vera, but its been years since I studied it. Please stay with us, you may be unique in that you have a rare form of a rare disease but there is plenty of support none the less. Obviously we all now have something to learn, learn about, and watch for.
It turns out that this is a fairly recent train of thought (the connection between PsA and PV), and has only become recognised in the last 5 to 10 years.
It would seem that in some people, like myself, that years of treatment (25+) with anti inflammatory / DMD's / Anti TNF etc, can either cause or speed up a PV reaction. However, that is not to say it will effect everyone, nor should you stop taking your meds.
The key is to make sure your 'red cell count' is not increasing to above normal levels. And, that any swelling of the lower limbs is not put down to water retention / slow circulation / alcohol intake / varicose veins or dehydration, as this is the 'old school' approach to these symptoms.
Since l have received the correct treatment for this (yes, including venesection :)), my condition is more stable.
I suppose it is no surprise on reflection, as PsA and PV are part of the systemic disease family?
You suppose right. NOTHING surprises me about PsA anymore. I would think if it was a treatment reaction it would be more a NSAID or DMARD reaction??? How are your other symptoms doing???
Do they still consider Bone Marrow Transplant or is that real old thinking???
My symptoms are as erratic as ever (bless the little dears). And l cant match them to the ebb and flow of the PV! Well not yet anyway :).
As for further / future treatment for the PV, this is still dependant on my next blood tests, including a sample of bone marrow. What happens next is in the lap of the gods (Zeus, be nice).
As always, l remain optimistic on what happens next. After all, its no ones fault, and we just inherit these things from our forebears.
l also agree with you about the meds, as the worst ones for me were the DMD's (particularly methotrexate and Sulfasalazine), as not only were the side effects (for me) pretty bad, but they can affect the old blood!
Hi Pete,
This is a fascinating thread. I had a quick look at PV, as I must admit I knew nothing about it - I’m a bit unclear if its related to PsA because of some connection with JAK2 (which believe is being considered as a new target for therapeutics for inflammatory arthritis), or if its predominantly a side effect - did your doctors give you a bit more info on this?
Your on the money Jen (did not want to confuse people with all the various tests, and especially with JAK2).
To answer the first question, there is a suggestion that systemic condition's like PsA can also lead to, and or include high red blood cell counts. Secondly, there is also a chance that extended exposure to DMD's, may promote / accelerate PV, as in my case.
They think the bone marrow test is the way forward with treating the PV long term. However, the information relating to PV / PsA interaction, is based on the fact that there is a significantly higher occurrence of PV, in people with inflammatory RA conditions!
I hope this makes sense, as l am still trying to get my head around it all?
Yes Pete - that made perfect sense. I don't know too much about the JAK2 stuff - there's only so much time for research with the life I have, it was just something that caught my eye on the Wikipedia article about PV. Good luck with the next step, and I love your optimistic approach!