PMR/GCA -Trouble with First Taper

[1988jtb]

Thank you all for replies. Really need guidance, as doctor is often hard to reach. I seem to be having alot of trouble with my first taper.

As I mentioned earlier, I started with 60mg for about 3.5 weeks in early August. Then I moved to 55mg/50mg. Looking back on my journal, I agree with DL, this taper was too fast. Thank you DL. At the end of 3.5 week 60 mg taper, I felt good, but I did have one/two lingering symptoms - night sweats, very slight headache. I just felt so much better, I just figured the disease was being controlled.

Then, the rheumatologist suggested I try 55/50 mg. Again looking back, at 55/50 taper I still had various small symptoms, not everyday but very often. Slight headache, body aches, feet pain, etc. Again, since I felt pretty good, I figured I was doing ok. Next, I tried to go to 45/40mg. This time my body said no to to the 45mg step and I developed alot of headaches, body aches, and tingling feet for 4-5 days. So I went back up to 55mg for 14 days and things have calmed down.

This is where I am now. Now I see I really am having alot of symptoms- headaches, feet pain, eye strain, fatigue etc.- just not as severe as in the beginning of this journey. And I can see how disease is just not calmed down.

At this point, I am thinking of basically starting over. A do-over to bring inflammation back to where I was at end of first 60mg. I would greatly appreciate opinions of this community. Like others, I am very fearful of vision loss and would others' wisdom and experience.

Thanks again for any advice offered.

[DorsetLady PMRGCAuk volunteer]

Have replied to previous post but will copy here for completeness -

Agree with your thinking, and in that case, back to 60mg and stay there for at least 2 weeks, although 3-4 would be better. Then 5mg reductions again at 3-4 weeks [you may be able to manage every 2 weeks, but there's always a risk it won't be long enough to be sure that dose is sufficient before you drop down.

It may sound slow, and your doctors might not be as happy as you are going that way,.. but their way hasn't work and to be honest, what's not to like about -slow and flare free rather than quick and end up in a mess!

Slightly different scenario as had already lost sight due to late diagnosis - but I was on 80mg for 2 weeks, and then 60mg for another 8 weeks - no doctors pushing to get me off the Pred. Result - no flares and just on Pred [nothing else] in remission and off all meds in just over 4 years - that was September 2016. Zilch since!

[1988jtb in reply to DorsetLady]

Thank you for such a quick reply. And I will continue to try to get response from Rheumy.

[Blearyeyed]

I'd agree with DL but I think it's worth contacting the Rheumatologist and letting them know and keeping them in the loop. It helps to do that to maintain a good working relationship with them in the future , especially if you want to have a slower taper when you get to lower doses.Ask if you can go back to the original dose or whether you might benefit from a longer time than a couple of weeks on a slightly higher dose . Ask if you can go slower with your taper and drop by 2.5 mg amounts after you get back down to 55mg rather than 5 mg as this might help.

If you find that even the dose increase does not help and your symptoms are getting worse ring Rheumatology and ask to see some to be properly assessed. You can't be too careful at the beginning of treatment for GCA.

Take care , Bee

[DorsetLady PMRGCAuk volunteer in reply to Blearyeyed]

Think 1988jtb is still waiting to be fully assessed by rheumatologist-was seen in ER and given advise by various consultants etc -as seems to be the way in US.

But agree I should have added rider that a full discussion with medical team is required.

[1988jtb]

Thank you for such a quick reply. I will also ask about small dosages- 2.5mg. I like that idea. And I will continue to try to get response from Rheumy. But I do have appt. next week on the 2nd.

[SnazzyD]

Ditto what has been said already. However, bear in mind that even when inflammation is controlled, at these kind of doses one doesn’t feel ok. Sweats are common and squiffy focusing of the eyes that can be quite disconcerting. Some people have a headache and I remember a stuffed achey head and face feel. I also remember deep fatigue and having to move almost in slow motion. My muscles also resented doing anything more than a slow dog walk and would complain if I did anything that required strain.

At first these effects didn’t seem too bad but after about 3 weeks it got worse and then by 3 months I felt like I was in another body. Aches and pains occurred as my potassium dropped and I also like many, found I needed to take magnesium too. Withdrawal symptoms, from day 1-4 for a few days to a week meant I had to spend time in bed as if I had flu. I felt my most ‘Preddy’ down to about 20mg but I do think as one drops the improvement is delayed. Even at these doses I certainly felt 5mg drops.

How soon do these symptoms kick in after reducing?

[suzy1959]

I just wondered from your post if you are alternating doses every other day? Some people are advised to do that by doctors but it is not a good idea . Very confusing for the body!Much better to reduce the dose using the very slow method advocated here, to give your body a chance to get used to the reduction.

[PMRpro Ambassador]

Bear in mind that the pred is only relieving symptoms - it has no effect on the actual underlying disease process which keeps chugging away in the background attacking your body tissues, creating inflammation which the pred mops up but not before it has had an effect on your body. This is a serious systemic illness which can't be cured but only managed - more or less well depending on the dose of pred. It is a bit like having flu that goes on and on. You need rest and lots of TLC to give your body its best chance of dealing with this. It WILL improve - but not suddenly and probably not that soon.

[Omakaat]

Just an addition to all the wise words said above: the tingling feet, and feet pain, can be caused by nerve damage because the bloodflow in your legs is interfered with by the inflammation. No, it is not common, but it is serious and it usually does not get better. I have it, no fun and frankly I am scared stiff it will get worse. Slightest feeling of extra numbness in my legs: I up the prednisone. The ability to walk is essential to quality of life, and rheumatologist who are not specialized in vasculitis don’t know enough about this complication. Reading your account: I personally would not delay upping the prednisone.

[1988jtb in reply to Omakaat]

I had this feet tingling, soreness issue before PMR/GCA but I am noticing it more often now. In the past , I found that if I really cut down on any added sugar in my diet it did sometimes help. And after thinking about your post, I just remembered that following my PMR/GCA diagnosis, I found a few small red spots on one foot. They are gone now, but will have to keep watch. Thanks again.

[Omakaat in reply to 1988jtb]

Well, the fact that cutting down on the sugar helped, seems to point to a different cause of periferal neuropathy: diabetes? And that can be agreviated by prednisone. Cause for concern on both fronts. Definitely needs a doctor’s attention.

[1988jtb in reply to Omakaat]

Sometimes I also find that massaging my calf helps relieve and foot/toe cramps. That would be such a nice clean answer.

[Omakaat in reply to 1988jtb]

Absolutely! Prednisone also makes great inroads on your body’s buffer of vitamines and minerals and on your body’s ability to absorb them, and a lot of people on this forum take extra magnesium bisglycinaat to counteract this side effect, or, and I have no experience with this myself, with using Epsom bath salt? I gather it is a very British thing to do, but bottom line: it helps with cramping leg muscles. I do wish you all the best, it is quite something suddenly ending up with all these extra troubles. Especially since you feel ill already. So I keep my fingers crossed that massages ( and some Epsom salt?) will turn out to be the nice clean answer!

[Grammy80 in reply to 1988jtb]

Over the years, what works for me is Schweppes Tonic water with quinine. I keep a bottle by my bed and gulp like I haven't had 'a drop' for two weeks....for me they disappear. Fingers crossed. But whatever works!!!!💞

[1988jtb]

wow- very interesting. I have thought about peripheral neuropathy and that does scare me too. I know the doctors don't have much treatment for it. Thanks for info and warning.