Hi, it's me again. During an eye exam, I was told my optic nerve was narrow, and that I needed to be seen asap due to the risk of blindness with GCA. I got in to see a neuro ophthalmologist who told me that my optic nerve isn't narrow, it's just turned on an angle. Probably from my connective disease EDS. Whew! What a relief, optic nerves in both eyes are good!!!
Also saw Rheumy who has been pushing me to taper steroids more quickly. I was on Actemra for reducing Pred, but I cannot tolerate it. Stopped 2-3 months ago. Since stopping Actemra, I've been able to reduce Pred faster, because Actemra was causing horrific headaches which I mistakenly thought were from GCA, and was afraid to reduce steroids. I had been taking 35mg for several months due to the headaches. So I've gone from 35mg to 15mg over the last 7 months. I know I need to go slower on lower dose. So far so good on 15mg.
She mentioned that I may want to try Methotrexate to lower prednisone. I have to admit that I'm scared to try another drug. I feel like prednisone is the devil I know and Metho is the devil I don't know. If I am able to reduce down to 10mg, is there a danger in staying at 10mg (or lower if I can do it) long term? Which is more dangerous to the body--Metho or Pred? I've been reading the recent posts on Metho which are really helpful. Thank you as always. I don't know how I would have survived without this forum.
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potterylady
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It very much depends on the person - most rheumies will insist that all rheumies would prefer to take MTX than pred as it is "safer" and "better". Better for what I'm not sure. It all comes down to whether it works or not. In PMR, MTX works brilliantly for a small cohort of patients. For some more it allows a few mg less at the cost of being exposed to 2 immunosuppressant drugs. For a lot more it makes little difference or is intolerable. I suppose it is fair to say that you have to try to find out which group you belong to, there is no way of forecasting it. I belonged to the last group and only lasted a month before stopping due to overwhelming fatigue and other adverse effects that were just unpleasant but it was causing weight gain, something that had never really been a major problem with pred alone. MTX can make pred effects worse - its role is to increase the effect of pred as an antiinflammatory and so it can increase ANY effect of pred, good and bad. It is also thought to calm the immune system down so reducing the risk of flares.
How well it works in GCA I don't know, there have been no really good studies but it has been said it works best when started right at the beginning, alongside the pred. Again, you have to try to find out.
If you get to 10mg on your own OK, I would be reluctant to add MTX. There are other IL-6 inhibitors - have they not considered one of them? But even Actemra only gets half of patients down to about 10mg, because GCA has other causes of the inflammation besides IL-6 which require pred for successful control.
Wow Pmr pro, this is SO helpful. I was worried about taking another immunosuppressant drug on top of prednisone. And the side effects sound horrible. I don't need any more weight gain or fatigue or nausea as I've heard it causes. You really summed it up. The crazy thing for me is that while I was on Actemra, I wasn't able to taper below 35mg due to the side effect of headaches from Actemra. At least that's what it looks like was happening. I'm so happy to be at 15mg not and heading to 12.5mg. I have hope to be able to make it to 10mg on a slow taper. Thank you so much I really appreciate it.
The weight gain with MTX is very unusual - the nausea can also be dealt with, as can a lot of other adverse effects, by giving more folic acid. It isn't by any means as bad as you seem to think. But I don't think anyone who can get to under 10mg on their own should add it to pred unless there are VERY good reasons to do so, But I'm not a doctor!
I have been fine on methotrexate, I have occasional bouts of mild nauseau and use a anti sickness pill that works very well. The side effects for me were much better than those I have had with pred/
Has your rheumy suggested a chest x-ray before starting methotrexate? Just a thought - I was supposed to be adding it to pred but the 'just in case' x-ray showed a 4cm lung tumour so I'm obviously a total no-no for that drug. The tumour turned out to be benign, thankfully.
That's crazy! And scary! I'm so glad it's benign. She didn't mention a chest x-ray but now that you did, I know to be sure to get that beforehand, if I take it. Thank you so much.
When I saw my rheumatologist last week (first in person appointment since Nov 2019), he was keen to add in a steroid sparer after a blood test showed increased inflammatory markers over the summer and I’d increased from 3.5 to 40 (which seemed excessive) for 4 days, then down to 6 (which seemed too low), then a month later up to 20 for 5 days, then back down to 10, and now 9.5 (hopefully 9 later this week).
I used the same “rather the devil I know, than the devil I don’t” argument, and he agreed to carry on with the monthly 0.5 taper … as long as I promised to be better about getting in contact with any increase in symptoms - although most seemed more like the steroid reduction (general aches and occasional “fluiness”) rather than GCA (occasional rather than persistent headaches - put down to dehydration, too much sun/chocolate/stress, no jaw claudification etc).
Wow, up and down, up and down. Same here. Monthly 0.5 taper sounds good once I'm down to 10mg. Still hanging with 15mg as I tried to go down to 12.5mg like my doctor told me but I had a terrible reaction, so it's SLOW taper for me too. Good luck and good health to you.
You have rec'd good info from PMRPro. I could be wrong, but if you are happy and comfortable with the Pred, why add anything else? On advice from my Neuro-opthamologist, he said that if one can make it down to 3mg, one could stay on it forever with no harm. I was on TCZ for 2 years and started noticing changes in my skin, so finally stopped. Now just sticking to low Pred. Good luck in your decision and think your body is telling you something.
Strange little lesions/blisters popping up on my arms & legs. So, said that's enough of drugs. Had stopped the Pred and the TCZ, but the CRP & ESR were rising, so finally settled on the 2.50mg Pred. It seems to be doing its job and as I said, the Neuro-opthamologist endorsed it. Good luck with your decisions. You really do need to feel good about it. If we are stuck with PMR, then at least be comfy.
That sounds terrible. Scary stuff. I agree with you. We need to feel good about what we're taking, not scared about it. You're lucky you are on such a low dose. I hope I get there someday. Good health to you!
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