Help please

[Gentlegill]

Hi I was diagnosed with Gca in October 2016 I have been on steroids all that time . I started at 60mg as symptoms were severe although they warned me biopsy would come back negative which it did. I have managed to get to 10mg a day now but everytime I tried to go lower symptoms got worse again . My consultant suggested methetraxate tablets 15mg once a week fine to start with then loads of side effects. I am about to start with metoject pen as they have told me the side effects shouldn’t be so bad. My quality of life is terrible at the moment and I don’t want be like this I am normally a happy bouncy person but life is now a pain I just want to get some of the old me back don’t know what to do.

[Hidden]

Hi Gill

I had/have PMR & l could never get below 11mg & l had a couple of flares ending up on a 30/20/15mg for a week each then start to try reduce again.

I eventually ended up ‘stuck’ at 20mg & think you may have just read my reply to Kathy & Mary.

I stared Methotrexate at 10mg for a month, then up to 20mg

It certainly wasn’t without its issues, nausea, tiredness etc

I changed the day l took it, as cooking smells affected me (Sunday Roast) l tried it in an evening & took an antiemetic for a while but eventually I mastered it, l l lived on a fairly bland, which mainly consisted of chicken sandwiches for about a month!

I now don’t have any issues with it but occasionally if l smell fat or oil cooking at high temperatures! 🤢

Do you take Folic Acid on your non Methotrexate days?

Good Luck 🍀 with the injection as that by passes the gastric route so hopefully that’ll be much better for you.

Best Wishes

Mrs N 💅🏼

[Gentlegill in reply to Hidden]

Thanks MrsN yes I take Folic Acid on non Methotrexate days it’s the stomach aches and headaches that get me so the injection is next option. 💕

[Hidden in reply to Gentlegill]

Wishing you all the best with the injections & let us know how you get on xx

[Alliand]

Hi Gentlejill, What are your symptoms of GCA? I was found to be C- ANCA + with new upper body pain I never experienced before around the same time you were diagnosed. All other inflammatory markers negative.I was on 16 mg. steroids/ day. Felt much better for about 6 months on steroids; when it was suggested I slowly taper off, I got down to 8 mg. and at that dose temporarily lost Vision in left eye and musculoskeletal pain returned, but not quite so bad as originally.

Rheumatologist put me on once weekly methotrexate 15 mg. every Monday Of course, everyone is different, I have had no side effects from it worth mentioning, and feel it has helped with musculoskeletal pain to a large degree, although still with chronic fatigue.

What tests led to your diagnosis of GCA.? Did you have a biopsy? And what is a metoject pen? I recently had a duplex doppler of the carotid arteries and orbits of eyes, results still pending. Short of biopsy, doctor is checking for GCA.

As I understand it, many of us have a hard time going below 10mg b/c that is approximately the amount of cortisol your adrenal glands secrete under normal circumstances per day. The steroids start doing the normal work of the adrenals, and the adrenals stop doing their job b/c the steroids are doing it for them.

Below 10, and your adrenals need time to wake up ,so to speak ,which can take awhile as you go lower and lower. Sometimes symptoms come back too with tapering.

But the methotrexate may help out during steroid taper. But I know that my quality of life has been impaired too, and you just want to feel like your old self again. At this point, I really have to pace my activities, and I can see how people can become depressed due to this illness.

Keep hope...

[LizMitchell]

Dear Gill

I was diagnosed with GCA and PMR in July 2015 and have had two major flares since, both of which I endured for two months each time as I desperately didn't want to increase the steroid dose at the time which was 8mg. I relented when I couldn't stand the pain and lethargy any longer and had to go back up to 12.5mg to bring the symptoms back to an acceptable level of comfort. Reluctantly, in September last year I agreed to take on Methotrexate, which I initially took 10mg by tablet form for the first 8 weeks with no side effects whatsoever. Rheumotology suggested an initial dose of MTX of 15mg, which I declined, although I understand that 15mg or less is deemed to be a low dose. I had to have blood tests every 2 weeks to check that my liver was coping OK, which it seems to be, and now I have blood tests every 4 weeks. After the initial 8 week dose of MTX I opted to change from tablets to Metoject Pen, because I didn't want to subject my gut to any more medication and avoid the possibility of sickness should I have to increase the dose by tablet, as well as it being better from an absorbancy point of view to go straight into the blood stream. I also take Folic Acid, which I don't take on the same day as MTX. The injection process is really easy and straight forward, only takes a minute and is practically painless to administer. Since being on MTX I have been able to reduce the Prednisolone by half a mg a month from 12mg and now on 8mg, so it seems to be working so far as I feel generally well with an acceptable pain level. PMR and GCA are the most frustrating conditions to manage, driven by their own agendas, but everyone on this wonderful forum is there to help!

I wish you well.

Kind regards Elizabeth

[Sho-Sho in reply to LizMitchell]

Liz- Can I ask you if you think something triggered the flares or did they just occur for no obvious reason. I am now down to 8mg after 22 months and am worried about possibly having a flare.

Sho Sho

[LizMitchell in reply to Sho-Sho]

Hi Sho Sho

No I don't think anything in particular triggered my flares, they just happened. PMR and GCA have minds of their own and they are in charge, so we just have to deal with whatever is thrown at us. I know it is really frustrating and at times it is hard not to get depressed about it, but I live in hope that one day it will burn itself out and good health will resume once more. As hard as it is not to, worrying about what may or may not happen will not change the course of these nasty conditions.

I know that we are all different, but if it helps I have always had regular blood tests to monitor CRP and ESR and if they are raised I don't reduce the Prednisolone.

I wish you well in managing your own health issues and to take heart that there are so many wonderful people on this forum offering their support.

Best wishes Liz

[Sho-Sho in reply to LizMitchell]

Dear Liz

Thank you very much for your reply, really helpful - as you say this forum is fantastic with so many people happy to help others.

I have been lucky in having a vary caring Rheumatologist and Doctor, but I think I have learnt more from the forum.

Best Wishes

Sho Sho

[Gentlegill in reply to LizMitchell]

Dear Liz I think the trigger was the fact I had had breast cancer 11 years earlier and had radiotherapy which made my immune system very weak my doctor was very quick to pick up the GCA as I had headaches flashing lights and jaw pain which said were classic symptoms he rushed through a blood test to confirm and my biopsy was 2 days later I have him to thank for his quick action. I have had another flare in the past 18 months but we got it under control. Fingers crossed the Metoject pen will work as the side affects from the tablets are awful. Thank you for your help

All the best Gill ❤️

[LizMitchell in reply to Gentlegill]

You are very welcome!

Best wishes Liz x

[PMRpro Ambassador]

After 18 months of pred for GCA to be at 10mg is superb. You aren't reducing relentlessly to zero, you are looking for the lowest dose that works for you.

If mtx isn't working for you - tell them and say you don't wish to take it. There is no reliable evidence that it will help you reduce your dose of pred (it may for some, but by no means all) and its use should be in agreement between the doctor AND THE PATIENT.

[SheffieldJane]

I think that you have done so well to reduce to 10 mgs from 60mgs. Do you think Methotrexate has made you feel much worse? I have yet to meet anyone who has said it really helped them to get off steroids. With a disciplined patient like you, I would have thought you would be better reducing from 10 mgs in your own time, very gradually. Some doctors keep their patients on 10 mgs for a year as part of the treatment protocol. I would be discussing ceasing Methotrexate.

Apart from the Methotrexate side effects, how are you?

You will get your bounce back I am sure. Stick with us for a while.

[Hidden]

Have GCA/PMR and tried Methotrexate for 3 months. Ok on 15mg and then upt to 20mg. Made me very poorly so back to 15mg. Felt so poorly on it I stopped taking it and took me a couple of weeks to recover from it. Told the Rheumy that I didn't need to take drugs that made me feel worse than I already did.

[Sho-Sho]

Hi Gill

Like you diagnosed with GCA in August 2016, started on 60 mg of steroid, found reducing the dose a nightmare - by end of Jan 2017 on 22mg and found it impossible to taper so my Consultant started me on methotrexate. After taking it for four months I felt so unwell, had been feeling pretty awful anyhow from the GCA and high steroids, she took me off it and after a few weeks felt much better. I was able to get down to17 while on it so probably helped - since then I have tapered very slowly and am now down to 8mg having reduced by half a milligram a month using the Dead Slow method.

Life is bearable again as long as I really pace myself - I have been told it could take another year before hopefully getting off steroids and I know there is no point in rushing it.

Hope you feel better soon.

Sho Sho

[Islandgirl50]

Hello , I also was diagnosed ( rather late) with GCA, in may / June 2016 . Fortunately my sight was saved , for which I am eternally grateful . I was immediatly put on 65 mg prednisalone. And then as soon as I saw specialist, I was on 20 mg methotrexate weekly . I am now down to 4 mg prednisalone, trying the EXTRA slow method with some success to get down to 3 mg . It is very hard when having been on high doses to make that decrease below 10 . I have been very fortunate, except for the moon face , which has now gone, I have had no nasty side effects , ( of course no sleeping when was on high doses) sleeping well now....... well most of the time. I have no problems with methotrexate at all , still on 20 mg per week .i have folic acid twice weekly , and am generally feeling quite well . With my experience I would say to give methotrexate a trial . It's not all bad . If it doesn't agree with you, we'll , then tell your Dr and try something else .good luck with what ever you do , it's a rotten scary thing this GCA?.. Angeline . 💐

[PMRpro Ambassador in reply to Islandgirl50]

There seems to be evidence that if it is started IMMEDIATELY it has a better effect than when introduced after the first month or so.