GCA or steroid effects update

[Bluey-1]

Saw rheumatologist yesterday. After sleep improving starting 17.5 mg on 30/8 had a dreadful weekend and felt I had gone backwards with exhaustion and slight tension type headache in the night. Sadly CRP up from very low level a month ago (1.2) to 29. As I suspected, a flare. I am now back up to 20mg with a blood test booked for the 13/9 to monitor inflammation. Rheumatologist will contact me next week and has given me her email address for contacting her if need be. She was reassuring about being able to go on holiday late September. She says (don’t I know it!) I’ve had a severe reaction to the steroids. She gave me a booklet on Methotrexate for consideration. Having read it I really don’t want to go down that route at the moment. My feeling is a slower taper hopefully will help. However, I have been anxious, cannot cope with the slightest amount of stress and the cumulative lack of sleep over months now, including feeling unwell a few weeks before the diagnosis, has been exceptionally draining. This started with an infection but prior to that I had experienced prolonged stressful events for two years previously. I can’t help thinking stress is a big factor in this strange trickster condition. There seems very little quality research on steroid sparing therapies - or I may not have found it. I’m only two months in and recognise the long road ahead. I’ve been active with Pilates stretching exercises daily which feel wonderful but have felt very drained to do much walking at the moment. I have really paced myself, am eating healthily, listened to my body, not overdoing it, aimed for balance, but here I am. GCA does its own thing doesn’t it?

[PMRpro Ambassador]

There are small studies on methotrexate and leflunomide - but while there is a lot of TALK about steroid sparing medications, there is an assumption that drugs that help in other conditions will also help in PMR/GCA. Since they haven't a clue as to HOW they work to allow patients to get to a lower dose of pred it is a bit difficult to see how they can come to that conclusion!

I think the assumption has been that PMR and GCA are done and dusted in a couple of years so the amount of pred involved is not enormous. Now the charity and we patients are putting our oars in, they are realising that PMR is not the simple, easily managed condition they thought it was. Things have changed a lot in the last 15 years. Methotrexate does work very very well for a small cohort of patients - but you can't predict which, you have to try it and see if you are one. The same probably applies for leflunomide - a small study some years ago claimed it got 21 out 23 patients into remission. But a lot of patients really struggle with the side effects of both MTX and LEF. If you felt well and were able to function well on pred, as I do, then feeling worse than you ever did with untreated PMR isn't an incentive to persevere!

There is currently a study with LEF ongoing in the Netherlands and Prof Mackie is about to start one with MTX in the UK. But such studies take years to report - because not only must patients be recruited but you can't just do it for 6 months or a year, you need to know if remission happens, if the "steroid-sparer" does reduce the amount of pred required (and that may only be obvious in a year or more and with large numbers of patients), Covid put the mockers on a lot of the work - and, above all, you need funding. Lots of funding. And these are old and very cheap drugs so won't make lots of money for the drug company even in the long run. PMR and GCA don't attract money - only suffered by elderly patients who no longer have a lot of financial clout when excluded from the workplace and don't have the cuteness factor to get attention.

[Bluey-1 in reply to PMRpro]

Thanks for this summary. My feeling is I need to persevere with a slower taper. I’m doing all I can on the healthy eating, meditation, gentle exercise front.

[DorsetLady PMRGCAuk volunteer]

“She says (don’t I know it!) I’ve had a severe reaction to the steroids. “

Actuality I would say your reaction to high doses of steroids is quite normal -not severe. She obviously doesn’t see many GCA patients.

Insomnia and feeling anxious are common side effects - and both can be mitigated to a certain degree -perhaps you could discuss that -either with Rheumy or your GP.

Yes you are correct, GCA does it’s own thing, but it can be helped greatly by a sensible taper -yours has been too quick. 60mg to 17.5mg within 2 months is bonkers, bordering on suicidal. I said similar in previous post …, and that really doesn’t help your general state of well being. Your GCA is still very active -and prone to flaring - certainly in first few months -something else your Rheumy doesn’t seem to have grasped.

Hopefully the increase will address the flare -but have to say I don’t think it’s quite enough. But fingers crossed it is…

.. and agree about introducing MTX so early in process. Give the Pred (at the correct dose) a chance to work!

[Bluey-1 in reply to DorsetLady]

I’m not sure it’s enough either, although I did decrease from the bigger doses with no noticeable effects. I’m of small slight build, don’t know whether that is of any matter with dosage. I had been given standard information outlining the taper plan and the markers a month later showed a low normal range. I’m seeing my GP on Friday who is interested in my case. He suspected GCA and had organised the correct blood tests which arrived at a timely moment when I arrived in eye casualty the following day in June. It’s all such a roller coaster and you really have to be ‘on it’ yourself.

[DorsetLady PMRGCAuk volunteer in reply to Bluey-1]

Think you need to have more contact with GP he seems to be more with it than Rheumy...

Stature may make a difference with steroid dose, but you still need the correct dose. as for inflammation markers, you would expect them to plummet dramatically on v. high doses early days, mine did, but then evened out a bit more as I reduced, but they do have a habit of lagging behind symptoms.

Standard tapering it may be, but that doesn't mean it doesn't need tweaking at times...good luck.

[PMRpro Ambassador in reply to Bluey-1]

Being small does make a difference - but not half as much as some doctors seem to think,

This is a fairly reasonable approach - and illustrates the sort of speed of taper you should be starting with - certainly not any faster:

rcpe.ac.uk/journal/issue/jo...

It was written to help GPs manage PMR and GCA better when they didn't have recourse to a rheumy. Vanessa Quick still uses it in her role as a GCA specialist in Luton.

[Bluey-1 in reply to PMRpro]

Thank you. This is very interesting. I have much to discuss with my GP this Friday.

[Purpleprimate]

Good Afternoon Bluey-1,

I did not get on with Mex which made me feel a grotty & my hair started to fall out, or anyway more than usual, so stuck with Pred & am now down to 7mg although sometimes legs hurt then I take a couple of co-codamol. That's just me, but some people get on with it fine which means less Pred. If your doctor has suggested it, try it & see how it goes. Sorry I can't be more help.

[Golden20]

I feel for you, and all you’ve been going through. I’m so sorry but I really can’t give you any feedback on Methotrexate. Much like you, my Rheumatologist gave me a leaflet on it, when I experienced some severe setbacks trying to taper. After a great deal of thought, I decided not to take it and to continue with pred. Thankfully, steroids for me, have been my rock. I’m now at 2 mg. It’s Been 4 1/2 years getting there. PMR is stubborn. If Steroids are out of the question for you, I know for some people, Methotrexate has helped them tremendously. My daughter in law, is a phlebotomist and told me that she has many patients, that take Methotrexate and it works extremely well for them. I wish you all the very best and hope you find a medication, that will bring you relief from your pain. Thinking of you. God bless you. X

[Golden20]

Hi Bluey-1 I omitted to say, like you, I practice Pilates every morning and had done prior to my diagnosis of PMR. It really has been a tremendous help. Stay strong Bluey-1 x

[Bluey-1]

Thank you all so much. I see my GP on Friday and have a telephone appointment with the rheumatologist next Wednesday, following bloods done on Tuesday. I’m day 2 back up to 20mg and have no idea how quickly any steroid dose change should have any effect - if it does. Guess will have to wait for bloods. Getting a bit more sleep although awake in the night. I’m adding more mindfulness meditations from the Headspace app the consultant recommended which is helpful. Still feeling drained and some intermittent headaches - nothing like experienced earlier but enough to take paracetamol in the night. I do enjoy the Pilates exercises. My body feels great during and after them. My feeling is that I would prefer a longer taper of pred rather than add another drug which may have severe side effects.

[PMRrunner]

I have been on methotrexate for 16 months and I do feel it it has helped. I'm currently on 15mg and 5mg prednisolone (slow taper to 4mg) and feel better than I have for 2 years. I do have some side effects, disturbed sleep patterns, some nausea and hair loss, but nothing bad enough to cause me to stop the methotrexate. It's a personal decision and I maybe could have got to this point without the methotrexate but it has worked for me. It takes time to have an effect, my inflammatory markers improved before I felt a physical improvement so don't expect miracles and good luck with whatever you decide to do.

[Sharitone]

I had MTX for 8 months, for PMR/GCA/LVV. Apart from losing most of my hair - which isn't necessary if you have adequate folic acid - and initial GI disturbances, it didn't do me any harm. But no obvious good either. Apparently I had to try MTX before being given TCZ. TCZ has worked, and in retrospect I feel a bit aggrieved that I had to lose so much time taking something that didn't work, so staying at 15mg+ of pred for an extra 6 months. The hair is growing back, but still only about 3 inches long, after about a year and I still look like Worzel Gummidge!

But then, it has worked for others, so I guess you can't know until you try it!

I know you posted this a few days ago, but I had an email asking me to reply to you. Never had one of those before!

[Bluey-1]

Thank you everyone. It’s day 6 of 20mg of steroids. I’ve incorporated more meditation into my day (Headspace app), and enjoyed a 15 minute walk to meet friends yesterday for coffee. Sleep is better and I’ve had more energy. I know I’m a short way into this and it changes like the wind. That’s what’s difficult when you do all you can do re pacing yourself, good diet etc, and it comes back to bite you! Will see what bloods show up on Wed. Phone appointment then with consultant. As advised by my GP, I’ll get my questions ready.