I never had anaemia before getting PsA, but it's constant now and getting worse. I understand that it's anaemia of chronic disease & read up about it & how it's the body's response to perceived attack - fascinating stuff but the anaemia gets on my wick nonetheless. Maybe that's what's responsible for the big dark rings under my eyes that just get darker & deeper regardless of how well I sleep etc.
I've got a rheumy appointment on Monday. I've been on Leflunomide for 3 + months, on the understanding that if it doesn't help significantly the next step will be Humira. Well my swellings haven't shifted but my ESR (which previously has tended to rise after about 4 - 5 months on each new DMARD) is consistently good and low. I've got a lot more pain in quite a few joints but I have taken on board that pain is not a reliable indicator of disease activity. Fatigue is hum-ho, not nearly as bad as it has been but does limit me a fair bit.
I've seen this rheumy once before and was very impressed by him so I tend to think that he'll try to do what's best for me. However, if what's best is biologics, there are powerful economic pressures on rheumys in the UK not to prescribe them. It's a bit of a postcode lottery too and the health authority (or whatever it's called now) that runs the hospital is particularly cash-strapped.
So I'm trying to get an angle on how active my disease is. With more than 3 swollen joints I should meet the criteria for biologics. But maybe low ESR would be a get-out clause. So my main question is what, if anything, does anaemia of chronic disease indicate about disease activity? My GP phoned after my last blood test to tell me that my haemoglobin was lower than ever and that I should let my rheumy know. Sorry if this is a bit involved, any thoughts prior to Monday would be very welcome!
Your anemia may be your "get out of jail free card" Leflunomide has multiple types of anemia as a side effect.... I would say you need all the help you need to combat the anemia, and a drug that causes it may not be the best idea............. Absolutely your Rheumy should know.
When I was taking a higher dose of mtx, my hemoglobin dipped a little just below what it's meant to be. Since taking a lower dose (10mg) alongside Humira it is back up again.
I'm crossing all digits and limbs for you, Sybil! I hope that there's something that can be done to get the NHS system to start handing out biologics a little less frugally. I get the economic implications, but it seems to me that the model in the US doesn't net manufacturers a profit on certain patients (My situation: dr. prescribes, insurance charges previously negotiated lower rate to patient, patient has mild heart attack at cost and gets prescription assistance card, manufacturer covers all but a few dollars of the coast via prescription assistance). So why can't that work via the nhs?
Anyway, we're not going to solve that problem. I do hope that the anaemia could be a helpful "get out of jail free" card for you.
I have found that the Avara is making me anemic. I have always had a slightly low Red Cell count but since starting the Avara my White cell count, red cell count, hemoglobin and platelet count are all low and my MCV is high. I was also taking 4 Sulfa daily and have now decreased it to two. I'm also taking 5 folic acid daily, as I was having a burning mouth issue and the folic acid has helped with that. My last blood test showed my platelet count as increasing (went up to 138 from 128... normal on the chart is 150-400) , so this is good. I was on MTX for 7 months with the added sulfa and never had blood work changes like I am now on the Avara. My rheumy has copies of all the blood work and seems to not be concerned so I am thinking this is normal??
I had a really great few months(two months no flares) on this combo, I've also made some big diet changes so that too may be helping. I find when I add any of the foods I eliminated it does impact my PSA.
In comparison to where I was a year ago on the MTX &Sulfa Combo, yes I feel I am doing much better...maybe 80%. I recently had what I would call a flare, actually still have some swelling. My fingers on my right hand (especially pointer finger) were all swollen and tight, funny thing is the pain was not the intolerable throbbing I would get in the past with this much swelling. So for me yes, the current combo seems to be working. I still have pain daily but it varies and again is nothing like it was this time last year. My functioning life has increased and I am contemplating going back to work on the ship in the near future. I personally am feeling, if this combo ends up not working in the future I will be taking a break from all meds. I hope your appointment goes well and you find the combination that gives you a more functioning quality of life :-)
sybil said:
Rheumys haven't mentioned my anaemia either. But shortly after diagnosis I asked a rheumy nurse about it & she said 'rheumatology patients often just do run low' i.e. in Haemoglobin etc. The impression was definitely that it's just one of those things about which nothing can be done.
I suppose rheumys may well have to tactically ignore quite a lot of non-urgent symptoms while searching for treatment that will slug the PsA & deal with all its fellow travellers at the same time. But if drugs make things worse that's a different matter. I also take 4 Sulfa daily (I always forget to mention them) so maybe the combo is responsible for my worsening anaemia too. I think I'm all DMARD-ed out though. Do you feel like you're improving or at least 'well enough'? I've lost that feeling completely.
I woke up puzzling over the fact that there's no way I'll have time to mention everything at the appointment. My rheumy seems concerned about my heart for example, and for various reasons I'm beginning to be to. I'm going to get it all down to about 50 words then he can choose what to pick up on.
I think over time I've noticed that our PsA has taken a similar course in quite a few respects. Rather than interrogate you I'll look back at your posts. Thanks for your response.
TaraLynn said:
I have found that the Avara is making me anemic. I have always had a slightly low Red Cell count but since starting the Avara my White cell count, red cell count, hemoglobin and platelet count are all low and my MCV is high. I was also taking 4 Sulfa daily and have now decreased it to two. I'm also taking 5 folic acid daily, as I was having a burning mouth issue and the folic acid has helped with that. My last blood test showed my platelet count as increasing (went up to 138 from 128... normal on the chart is 150-400) , so this is good. I was on MTX for 7 months with the added sulfa and never had blood work changes like I am now on the Avara. My rheumy has copies of all the blood work and seems to not be concerned so I am thinking this is normal??
Sorry to hear Sybil. I hope you find a med or combo that gives you lasting success!
sybil said:
Thanks Taralynn. Great to hear that you're getting there. DMARDs helped me loads from the start & I don't get flares as such but what happens is I just sort of slide downhill slowly after a while on any of 'em. And lately I'm sliding faster than usual.
TaraLynn said:
Hi Sybil,
I had a really great few months(two months no flares) on this combo, I've also made some big diet changes so that too may be helping. I find when I add any of the foods I eliminated it does impact my PSA.
In comparison to where I was a year ago on the MTX &Sulfa Combo, yes I feel I am doing much better...maybe 80%. I recently had what I would call a flare, actually still have some swelling. My fingers on my right hand (especially pointer finger) were all swollen and tight, funny thing is the pain was not the intolerable throbbing I would get in the past with this much swelling. So for me yes, the current combo seems to be working. I still have pain daily but it varies and again is nothing like it was this time last year. My functioning life has increased and I am contemplating going back to work on the ship in the near future. I personally am feeling, if this combo ends up not working in the future I will be taking a break from all meds. I hope your appointment goes well and you find the combination that gives you a more functioning quality of life :-)
That's great news Sybil! I wish you success with the Humira!
sybil said:
My rheumy's just given the go-ahead for Humira and is checking out the anaemia. I posted a celebratory blog about it. I was very apprehensive about that appointment & support from people here helped bolster me up so much. Thanks all, once again!
TaraLynn said:
Sorry to hear Sybil. I hope you find a med or combo that gives you lasting success!
