I'm off Methotrexate
Posted , 9 users are following.
I finally saw my rheumy yesterday, following PET scan and temporal biopsy.
The side effects of MTX have been getting steadily worse over several weeks to the point where I was either sleeping or resting. It felt as if my body was giving up. I have also nearly lost my voice, it sounds as if I have a bad throat infection, although I don't, my voice has just gone.
The end result of my consultation was that she told me to come off the MTX as the side effects were just too severe. I'll continue with the folic acid until I see her again in 4 weeks time. I'm so relieved. I really wanted it to work, but it was leaving me unable to function. I will continue my taper of the pred unaided and hope for the best. Currently on 22.5mg for another 2 weeks, then down to 20mg. 20mg and below is where I've had problems in the past, so we'll see. I'm 6 months down the line since I started MTX and that further forward with the GCA, so maybe, if I'm lucky, I'll be able to reduce better.
As for the nodule on my lung, she will discuss with colleagues. She said it could just have been there all the time, but I pointed out that it wasn't there when I had an x-ray before starting the MTX. Funny how I have to point out the obvious!
The biopsy had shown no giant cells, - again not expected, but the surgeon performing the biopsy told me the artery section looked unhealthy and withered. Again, rheumy will investigate further.
So, I'm feeling optimistic, although exhausted, that I will be off the MTX now.
0 likes, 42 replies
FlipDover_Aust Susanne_M_UK
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I'm so sorry the MTX didn't work out for you Susanne. But good on you for trying. I so hope you feel better quickly.
Wow, I'm incredibly lucky, it's worked brilliantly for me.
Susanne_M_UK FlipDover_Aust
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You're one of the lucky ones in that respect, Flip.
constance.de Susanne_M_UK
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Why doctors and rheumies think MTX is a wonder drug for getting off pred I don't know! Rheumies insisted I took MTX (twice!!). Each time, within 4 weeks, I was being violently sick, lost loads of weight and, like you, slept far more than was awake.
It is interesting that you lose your voice, I thought I was the only one. However, after 2/3 years I still lose it - I put it down to the stress of PMR.
I am in my 5th year of PMR - atypical - lots of side effects, but coping now.
All the best. Constance
Susanne_M_UK constance.de
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Oh, you lose your voice too! My rheumy seemed very puzzled about it and keeps asking if I have a sore throat. I don't. It gets worse the more tired I am or if I've had to walk anywhere. It started after I went on MTX, but maybe that's coincidental. I'm blaming everything on that at the moment!
I had PMR for 4 years before GCA, but I was doing very well for the last couple of years of PMR, down to a very low pred dose.
Susanne_M_UK
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This is the first week without MTX. I used to take it on Saturdays. Yesterday, Sunday, I felt like a new person, not completely back to normal, but probably 50% better than I was, none of that feeling as if my body was giving up, no strange buzzing all over. I was still tired, but able to function quite well. We went out for lunch as it was our wedding anniversary. I even went out in the garden and did a little tidying up. I didn't sleep during the day like I usually do. I slept badly in the night though, my mind overactive.
Today, I'm very tired with a headache, I probably overdid it yesterday. Not the MTX tiredness though. I need to pace myself, but it's such a relief to feel human again. It can only get better as the drug leaves my system.
I've received my next appointment with rheumy, it's 2 weeks from tomorrow, so should be able to give her a good update.
We have a family get together coming up here that I need to prepare and cook for, I'm trying to keep it fairly low key cooking wise, the trouble is I'm "famous" in the family for my food and I find it so hard to lower my own standards. I think that's part of the whole PMR/GCA story, - always trying to do the best you can, striving for perfection, trying to carry on regardless.
Anhaga Susanne_M_UK
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I read with some alarm your statement that you have to prepare the food for a family gathering. I hate to say this, but I will anyway, you must scale back. I ran into a similar thing with Christmas. Although my three children are all in their thirties (I have no grandchldren) we have carried on the tradition of Christmas stockings. You can imagine how difficult and expensive that got as everyon got older, with their own homes, including significant others, and not going to be satisfied with a few toys.... I tried to stop a couple of times, and it didn't work. But last year, my first year on pred, and I was getting close to that 8 to 7 reduction, hadn't done any shopping during the year as I hadn't been well, I declared, this year I am going to give each of you a chunk of change and you can buy your own Christmas stocking gifts. I don't think they any of them had any idea how expensive this project had become over the years so when they got their money they thought it was their main Christmas gift! Anyway, long story short, they were all perfectly happy about this, although I still felt guilty. And even more happy when they got their main gifts from me on Christmas Day!
I don't know how you can handle divesting yourself of main responsibilty for the meal(s). But maybe you can say you will do one signature dish and others will have to bring their own specialties. Who knows, that might give rise to a great new family tradition!
tina-uk_cwall Susanne_M_UK
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Hello Susanne, I'm so pleased to hear that you are feeling much better. You gave MTX a good try and it wasn't to be. Now with one less drug in your body hopefully it's now simply (ha ha, simply!) a matter of reducing through the pred doses.
you really have been through the mill these last 6 months, I do sincerely hope it's onwards and up wards from now on in. All the best, tina
Susanne_M_UK Anhaga
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Oh, I know I must scale back and I AM trying. Someone is bringing a cake, so that's one item off my list. I'm cooking a few things for the freezer this week too. It's so hard to no longer be the person I was!
Susanne_M_UK tina-uk_cwall
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Hi Tina. Yes, when I get to 20mg pred, I'm going to insist on going very, very slowly. I don't want to yo-yo up and down to/from 40 again.
I'm feeling particularly tired right now, probably bed with a book soon and hope that tomorrow is a good one again. X
FlipDover_Aust Susanne_M_UK
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Susanne_M_UK FlipDover_Aust
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I'll be dropping to 20mg in a week's time, from 22.5mg. I then see the rheumy the week after that and we will discuss tapering. She knows this is my stumbling block and where I have always flared in the past. If I'm OK on 20, I will persuade her that I want to be extremely cautious.
FlipDover_Aust Susanne_M_UK
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Anhaga Susanne_M_UK
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Seconding FlipDover's comment. I also wonder if you could consider the dead slow nearly stop tapering plan even at 22 mg? This plan, or one like it, was developed by people who had trouble reducing to their lowest dose, and found that the very gradual taper enabled them to get comfortably down to lower levels than they'd achieved before. Can you get 1 mg tablets? This way you could drop to 22, then 21, then 20, over a matter of several weeks rather than all in one go, and then start the dead slow method at 20 if you are feeling good.
Susanne_M_UK Anhaga
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Good thinking! I'm going to do that. I already have the plan printed out, as I started it a while back at the end of last year, before I was put on MTX, but only for a short time, as my then rheumy then wanted me to taper his way Yes, I can get 1mg pred.
I will bring the plan with me for my next rheumy appointment and hope it meets with her approval. Hopefully it should, as their tapering has obviously not worked.
FlipDover_Aust Susanne_M_UK
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And you can always try my preferred approach
"it is easier (better) to ask forgiveness than permission"
Susanne_M_UK FlipDover_Aust
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