I'm tapering by 2.5 mg, currently on 45mg day 13, however, in the background I still get fleeting niggles, sometimes a little bit stronger, of ache in my temples or behind my eyes. If I ignore and continue on with tapering, I'm afraid this will eventually escalate into sometime worse and I will have to go back up. Do you think my fears are valid? I'm debating to go back up to 47.5 or heaven forbid, even higher. It seems like I am never totally symptom-free of what I perceive aches related to gca albeit they are very light and not long lasting, just few seconds. Do any of you experience this and what have you done? Thanks for any replies and suggestions. Oh, and I am on methotrexate week 11, currently 15mg. Not sure if its helping or not.
When to know it the disease and not pred side eff... - PMRGCAuk
When to know it the disease and not pred side effects
How often are you reducing by 2.5mg?
A lot of people are never entirely free of symptoms - I can't really comment on that for GCA as I don't have it but I would say if you are worried stay at the dose you are at or the one above for a bit longer before dropping again. I'm sure the GCA ladies will be along to say how they felt in the early days soon. But I'd say if the signs are fleeting it is just things settling down and that can take a while.
My rheumy wanted me to drop every 7 days but I felt that was too fast for me. Right now its been 2 wks at 45. I take a split dose, this am I took 35mg, will take 10 or 12.5 this evening, depending on how my day went. This disease is so confusing and most of the time I feel like I'm just floundering and guessing. I've been at such a high dosage a long time its taken a horrendous toll. So anxious to reduce, but I know I cannot rush it. I was hoping the mtx would be helpful but so far can't tell.
Thanks for your response.
I should add that a few days ago my rheumy did tell me maybe 7 days was too fast for me and just to go by how I feel, but not to up it past 47.5mg but to try to stay at 45.
I take mtx . Ii feel it took more than 3months for full effect. I started in December. I think it took until March for full effect. Then I was able to from 25 to 12 fairly easy. That’s where I am at now
Was it for GCA? Also, how long after diagnosis did you start methotrexate? How soon did you notice results?
Thanks
Yes it was for gca. I was diagnosed in April. I had double vision. I had two doses of 1000 mg Pred in the hospital,then 60, 50, 45, 40etc every 2weeks. I had a few ups and downs. After 3 dr tried mtx in December. I had one more up but I had a cold. Then it was steady until I hit 9. Blood markers and symptoms went up again. I went back to 12.
I'm curious, as you were reducing from 60mg every 2 weeks, were all your gca symptoms gone, i.e. any slight headaches, any scalp tenderness? sore or hurtful jaw? It's my understanding before reducing you should not be having ANY symptoms.
I never had scalp tenderness only an itchy head. That may sound strange but that is the best description I have( some might describe it as niggles) My pain is always accross my forehead and temples. I thought it was sinus. When I change doses I don`t notice it for a couple days then headache is minor . If it got worse then I contact dr and he did a blood test and changed the dose. I had my blood checked every 2 weeks when It was high and he adjusted it accordingly. When my blood numbers were just above normal it seemed to be the point where he either gave up or decided I could adjust it( i was at 20mg) with his approval via "my chart". I never had a lot of symptoms. My description to the dr was " I just don't feel right" I'm too tired all the time "and the blood test was the deciding factor. This may sound strange too but if I get a headache I take a Tylenol. If It goes away I assume it isn`t gca. If it is still there and there the next day or gets worse I contact my dr. This is a curious disease. I sympathize with drs. My symptoms were so similar and vague until the double vision and biopsy. I feel bad for those who don't have a positive biopsy. I can be sure that gca is what I have.
What toll darling ? I hope I can manage to stay on Pred it has saved me from torture xxxx
Hi gtate1914,
The trouble with reducing weekly (even at 2,5mg) you are never really sure that each dose is sufficient before you go into the next one( it can take over a week for your body to decide); and by the time you realise it’s just not enough then you’ve gone past the level that was okay. Hope that makes sense?
Early days I reduced usually every 4 weeks, occasionally 3 weeks, but only if I had no symptoms and my bloods were okay.
If it were me, I’d go up to 47.5mg stay on it for at least 2 weeks and see the outcome. Rheumy has indicated 47.5 is okay, so do it.
If things settle, then perhaps you could try 2.5mg reductions every 2 weeks from then on until you speak to Rheumy again.....but don’t reduce if you have symptoms!
Can’t comment on MTX - never on it!
I took 47.5 this morning. My rheumy tells me to pay attention to symptoms only if persistent, not fleeting or light. Not sure if this is a good idea because it seems as if those fleeting and light symptoms have always graduated in time to harder and more persistent temporal aches in the past. Often with a sensitive scalp.
Most things start small! I'd say - take notice when they start progressing to even slightly more than fleeting.
Just saw your reply, yes my niggles are small right now, at 47.5 which I took this morning. I wondering if I should wait until tomorrow to up to 50 or see if it might settle down..... or continue.....
I'd give it until tomorrow - don't be in too much of a rush to up the dose, especially since you are at a dose that is commonly used for GCA.
And yes - those are the symptoms you DON'T want to have in evidence before tapering!
So just to have it clear in my mind, the symptoms that need to be absent are the GCA, temporal/headaches, any scalp tenderness, or jaw pain upon chewing before tapering?
Those are the most common associated with GCA, but I would say any symptoms you had pre diagnosis. Of course, sometimes you get odd niggles that are nothing to do with your illness and that confuses matters. But, if it still there after a day then you need to consider it could be a flare.
An odd pain or headache can be treated by paracetamol- and if it disappears then usually that proves it’s something else.
All very confusing early days, but you do learn to know what is what!
Yes, it is confusing to this pred brain.
Sorry to run this into the ground and be a pain, so to speak, but when I say headache I mean a light one, lasting just a few seconds, but definitely noticeable and not something you would take tylenol/paracetamol for. But more than just a little niggle. My rheumy tells me to ignore it.
I think this is one of the reasons I have had such a hard time tapering is that I'm told to ignore the light, short-lasting headache/temporal aches and in a matter of a few days they become worse.
Thanks for being patient with me.
I've been on high dosage since March 2. Up and down.
And also the taper has been too fast.
It’s easy for Rheumy to say ignore...but not so easy to do! He’s probably correct, but if you are worrying about them then they are likely to get worse. On the other hand you don’t want to be upping your Pred every time you get the slightest twinge.
If it’s just a fleeting pain then I think you’ve got to try and dismiss it as just being that, but obviously if it continues or worstens then you need to seek medical advice.
Hi,it's my wife that is on meth.She had it via pill...very bad stomach now on injection 7.5, and much better side effects....I gather is 50/50 if it helps?
I think odds of 50/50 are far too generous. Maybe, possibly, if you are lucky, is more like it.
Given that nearly a third of patients on mtx stop taking it because of side effects, whatever they are taking it for, that isn't a good basis for 50/50 is it?
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