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
jeanne333 Susanne_M_UK
Posted
Stick to the steroids .. my RA put me on Hydroxychloroquine
COMMON BRAND NAME(S): Plaquenil .. for the same reason ..
4 weeks after starting it, I Had All The Severe Side Effects Listed. Now 8 long weeks later, I'm finally able to walk a short distance without a walker or cane; but for any distance I now have to use a transport chair. And they are worried about the Steriods.
marian-colorado Susanne_M_UK
Posted
What does the Pet scan reviel? Is it tocheck if your arteries are swollen. Does a Pet scan confirm GCA? Can you describe the type of head ache GCA brings on?
Susanne_M_UK marian-colorado
Posted
Marian
My rheumy decided on the PET scan because she says I'm an atypical GCA patient, not being able to get below 20mg pred, flaring with no elevated ESR or CRP. She wanted to see if there was any vasculitis in the rest of my body. It dosent necessarily confirm GCA, but it doesn't discount it either. That's why, when you have a temporal artery biopsy, if giant cells are found in the biopsy sample, it will positively confirm GCA, but often, the sample taken is not where giant cells are present, so it's often inconclusive.
Headaches, mine are temporal, like a fist pressing on your temples, and pain behind the eyes, but I expect we all have different types of GCA headaches.
marian-colorado Susanne_M_UK
Posted
The pain behind the eyes can be caused by Prednisone. (Glaucoma) Have your opthamologist measure it. I had that pain first bout of PMR/GCA 12 years ago. My sed is normal. I had Temp Biopsy done 12 years ago it was negative. This is such a misterious desease. It is driving me crazy. I am only 64. Would like a few more years living carefree! (Don't we all!)
Susanne_M_UK marian-colorado
Posted
Marian, I've already had my eyes tested for glaucoma and various other things at the top London eye hospital.
When I was first diagnosed (medically) with GCA in November 2014, pain behind my eyes was one of the symptoms.
Anhaga Susanne_M_UK
Posted
Susanne_M_UK Anhaga
Posted
It was done at the same time, late January. I'm due for an eye test, but have been putting it off, as my vision is blurred due to the preds and it seems pointless to get new prescription for glasses if it's going to change as I lower the preds.
Anhaga Susanne_M_UK
Posted
My raised eye pressure was determined after I'd been on pred for nearly seven months and had already cut my initial dose by about 50%. It's possible it had gone even higher earlier, but I wasn't as aware of possible side effects early on. Other than bone thinning my doctor hadn't mentioned anything, not even the relationship of GCA and PMR and symptoms I should be alert for. However four months later and a couple mg pred lower the pressure was nearly back to what has been my normal for many years. Had it gone higher I'd have needed to use drops. So it's worth getting that checked. Apparently even an optician in an eyeglasses shop can check eye pressure - so my rather laid back GP told me! I went to my own eye doctor because I wanted a thorough checkup including ruling out GCA.
Susanne_M_UK Anhaga
Posted
Once I feel up to it, I'm going to book an appointment for an eye test and they will also test the pressure. I'll explain about the pred and blurred vision.
Anhaga Susanne_M_UK
Posted
Marian Colorado mentions possible pred induced glaucoma. I was concerned as pred seemed to be giving me extra headaches and I was a bit worried about GCA. My ophthalmologist is very well-informed. He not only gave my eyes a thorough check-up (no sign of GCA, but increased ocular pressure warranted closer monitoring, with lower dose that side effect now gone), but he also gave me a mini-course in pred and GCA, far more than my GP had told me.
I also think it's really important we do what we can to improve our health and not rely on pred. Pred isn't curing us, just damping down the fiery symptoms. I thought I'd been living a very healthy life, but in fact there were things I've been able to modify and am now so far successfully reducing to 3 mg (from start at 15 mg June '15). These include cutting back on wheat (I used to laugh at friends who thought wheat was bad for them but now I'm not so sure), all other refined carbs and sugar. I also have been trying to figure out optimum supplements, as well as enjoying the summer bounty available from the local farmers' market.
Make sure you get lots of rest, but also do as much appropriate exercise as you comfortably can. Things do get better. ??
Susanne_M_UK Anhaga
Posted
An hagen, yes once I'm able to get myself off the sofa for more than 5 minutes, I'm going to take up some gentle walking and gradually increase it. I'm a vegetarian and eat a lot of fruit and veg and other healthy food, but having been on such high doses of pred for a long time, it's taken its toll on my weight.
tina-uk_cwall Susanne_M_UK
Posted
Hello Susanne, now you are off the MTX hopefully you will feel more positive and as you say you are further down the timeline so I'm keeping my fingers crossed that this time your reductions will be ok. Just remember small dose reductions and let your body really get use to the new dose fefore reducing further. I wish you all the best, tina
Susanne_M_UK tina-uk_cwall
Posted
Thank you Tina. Yes, I'll be going very slow once I get to 20. X
alley2 Susanne_M_UK
Posted
marian-colorado alley2
Posted
FlipDover_Aust alley2
Posted
Hi Alley,
MTX is used as a 'steroid sparer' - it makes the steroids work much more effectively - meaning you can take less predisone. It's usually only prescribed if you are on a high dose of pred and can't successfully reduce, although increasingly rhuemies seem to want people on reasonably low doses to take it as well.
It is a standard drug treatment for Rhuematoid arthritis. It's basically a chemotherapy drug and used as cancer treatment too.