Hi all, I'm struggling right now with quite a bad flare I think. Rheumy says the lupus is very active, from looking at my bloods. I had to come off Methotrexate (which works very well for me joint, rashes etc-wise) twice in the past 7months due to bilateral foot surgery (awful!) and then breast/lypmh node surgery. I have persistent neutropenia however and so whilst I am now back on it as of a month, my metho has only been recommended by my Rheumy for 10mg a pop. I have also started Tamoxifen and it is clear this is "potentiating" (as my Rheumy put it) the effect of reducing my neutrophils further. I was at 1.0 the other week and then 1.4. I have to say I feel utterly awful. Not felt this bad since 2016 pre diagnosis/meds. My Question is, is anyone else on methotrexate and Tamoxifen - and can tell me how it went for them? Just had phlebotomist visit so will see what the levels are in the next day or so.. seeing rheumy next month and also oncologist. I cant go on like this, going forward. Any thoughts? Thanks all and hope you are feeling as well as possible on this beaut of a day (in Sussex anyway).
Methotrexate and Tamoxifen anyone?: Hi all, I'm... - LUPUS UK
Methotrexate and Tamoxifen anyone?
Meant to say he also added 5mg of prednisolone a day to try and get my neutrophils up again....
Really sorry to read this and cannot help you really as only ever been on MMF and methotrexate plus steroids but my neutrophils were helped by the drugs as I have autoimmune neutropenia.... I take it that isn’t the case with you?
Hang on in there, let’s hope life looks up soon...
Me xx
Hey Leuann - hope you doing ok? Yes, I have always had neutropenia (can see on my records its been since 2004 (was at 1.0) which is far back as it goes on Patient access - my old doc just never put two and two together every time I was in front of him begging for help with my exhaustion/joints/and all the rest and wasnt unitl he retired and I got new doc who was like "whaat?!" and plus my by then utterly raging other symptoms and being almost face down in the carpet with exhaustion, he referred me to Rheumatology and the rest is history). Anyway. What is your neutrophil count at usually? And how do you feel? I have persistent 37.5/38 temperature whenever I am tested (been in a and out of a lot of hospitals/surgeries in the past 7months!). Do you have the same? Do you feel utterly exahusted/headache/unable to do anything much of the time? I suspect Ill have to stay on he steroids at this rate - but I always thought they were a bit like flogging a dead horse! Maybe not at this low rate ie 5mg. What are you on? Thanks Leuann... feeling a little panicky about all this right now... x
You have every right to feel panicky and yes I have been around the same level as you but it changes. I was only told about having neutropenia when the GP took me off methotrexate because my neutrophils were in my boots... at that point the consultant informed that I had always had low cell count and the medication could help (that was about 6 years ago)
Exhaustion, headaches, constant apathy, not so sure that I have ever attributed that to my neutrophils, more so my persistently low ferritin which has dropped 90 points in 3 months, or my thyroid which has left the building and finally just the lupus.... fevers, yes, sore throat, yes...
I suspect that your nervous energy is taking its toll on your ability to function not to mention all the medication. Your body will be working hard to just process that. This situation must be beyond scary for you, wish there was something that I could do to help.... xx
Sorry, forgot to say, I was on 20mg steroids but then had the steroid injections every 3 months. Preferred the tablet as the injection wore off before I could have another one...
Ahh yes... rheumy gave me a shot in the bum a few months ago, when I was taken of metho for the boob op - that was awful! Cleared up my swollen lesion jointy hands pronto and brought down the whole body inflammation but I was a mess! I couldnt sleep at all... even with sleeping pills, every two hours... for two weeks! and I was very jittery/remember writing on here like a mad banshee all hours of the night ;).. so thats no good for me. What a sensitive bod I am! Were you ok on it then? I hope so. It was like I was on speed (I would imagine!). x
Heheh.. dont think I have any nervous energy... no energy at all... she says lying in bed. Urg. No this is possibly due to me overdoing it the other day as I had to do a bit of housework as decided to sell my place to get something smaller. I was already feeling dreadful so cest la vie...it nearly killed me.. idiot that I am. But this is three days later and I feel even worse. Im not panicky that Im unwell... its just the thought of this being my new base line, even worse than usual - I cannot have this. I will definitely come off tamoxifen if this is the result. I have read blogs of peeps on it and who have come off it and regained their lives! Theyre quite angry they put up with it for so long! Yes, it is necessary to keep the you know what from coming back... but if the result is being bed bound and Im not massively high risk then I choose some semblance of a life with energy!
Thanks so much Leuann... good to have some support from peeps that understand. Friends can only try to... but, thankfully, they can only imagine. The writing is on the wall for me - ie COME OFF TAMOXIFEN and what will be will be.
Hugs x
Talk to the medics... a specialist nurse maybe rather than a consultant, I find that you can be less guarded and their empathy shines through... big cuddle xx
After my treatment for BC I went back on MTX and was given Tamoxifen for a few months, then changed to Anastrazole which I took for 5 years (just finished taking it). Neither Tammy nor Anastrazole caused any problems with my MTX.
Strange - I replied to you but it disappeared. /thanks for responding. I hope you are ok. Have you ever had neutropenia as part of your auto immune? I always have apparently so wasnt a good start ;). I cant take Letrozoel due to my pre existing lupus joints issues, rheumy and oncologist agreed. Im post menopausal so would have been the choice otherwise obviously. Ive jsut written to my rheumy and whilst I think hes on holiday, I know hell get back to me when he can. We have a good understanding. Thanks again and hope you are doing ok. D
and shoudl say - tamoxifen is known to lower neutrophils - as can methotrexate.
I am in the USA so not sure if you have access to a rheumatologist who specializes in autoimmune diseases after cancer treatments. My treatment center at Yale, has a group of rheumatologists who work within the oncology hospital just for the reasons you are mentioning. Cancer and its subsequent treatments are known to influence antibodies and autoimmune disease so it might be wise to have your two specialist meet to review and discuss best treatment options for you. Interdisciplinary teams are the best way to treat co morbidity and drug interactions and disease flares. I hope such advanced treatment is available to you. Good luck and I hope you feel better. Xo
Thanks Roarah. Yes my Rheumy and oncologist are in touch (I think!). That was the plan anyway. My Rheumy just wrote back that making the decision (me making it) to come off Tamoxifen would be one to think about carefully etc. Everyone reacts differently to meds obviously, but no point to me (who has no kids and dependents) feeling like death every day and to extend that even! Apparenlty my neutrophils are 2.5 today (great!) which is the highest theyve been in ages so I really dont understand what is going on. Mind you, they oculd be back down to 1.4 or lower again next week as they were 1.5wks ago. All very changeable. Anyway, thanks for writing from all the way over there - I appreciate it, and hope you are doing OK too x
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