GCA 1st timer posting.

[mrstrestle]

Hi Everybody

I've been lurking on these boards for a few months and decided it was time to post. Firstly, can I thank every one who offers their experience/advice etc. I have found some really useful information and insights here which have greatly helped me.

A little about me. I am a 64 year old female who was diagnosed (by my GP) with GCA on 16th Feb. this year. I was started on 40 mg of the hated Pred. that same day, sent to the hospital for confirmation of the diagnosis, politely declined the biopsy (what is the point when they will be treating you for GCA anyway?), and started the reduction process set out by the consultant.

I kept relapsing on his timetable so I, and my GP, decided to do it more slowly. By end of May I was down to 30 mg, but it has taken a toll on my body. Huge weight increase from 9st 2lbs to 12st 4lbs (now at 11st 10lbs), hallucinations, the inevitable moonface, fatigue, gasping for breath, tiredness, bad tempers/mood swings (my butler i.e. my husband doesn't much like it!), forgetfulness, and in early June a ruptured Achilles tendon which meant complete bed rest for 6 weeks. Don't know what I would have done without my butler!

Now down to 9.5 mg. That's enough from me for now.

[DorsetLady PMRGCAuk volunteer]

Hi mrstrestle

Despite your GPs intervention think you may still have reduced a bit quickly, but if you don't have any return of symptoms fair enough. Hopefully most of your side effects are beginning to reduce now you are down to a lower dose, and you'll probably find the weight will as well.

Take your reduction as bit slower now you are down to single figures, I found it became more difficult as I got lower, plus of course, your adrenal glands will soon have to start thinking about getting to work again, and that can prove a bit problematic for some.

So slowly does it, with plenty of rest, and listen to your body, rather than stick rigidly to "the plan" - that's all it is, a plan - it can and needs to be amended sometimes to fit in with real life!

Good luck.

[mrstrestle in reply to DorsetLady]

Hello DorsetLady

Thanks for this. In fact I'm using a reduction plan that you posted a few weeks ago. It's early days yet, but seems to be working. I am learning to give in to resting, I am used to walking my dog 3-6 miles every day, but haven't done that since Boxing Day. I have learned the hard way that rest is essential.

I am just grateful for the support you, PMRpro and all the others give to those of us who are beginners at this and in the early stages of our GCA journeys. Thank you.

[PMRpro Ambassador]

Welcome - tough about the achilles tendon. Is it OK now? I had achilles tendonitis due to my GP handing out a quinolone antibiotic while I was on methylprednisolone - a real no-no. Nine months on crutches with PMR is not funny! But I had a boot to reduce the risk of a rupture and was well warned.

You have done very well with that reduction - but why, oh why, are they in such a rush? It always ends in tears...

[mrstrestle in reply to PMRpro]

Hello PMRpro - Thanks for your reply. Yes, the tendon is healed now, but I'll have physio for the next 8 months with exercises to do on a daily basis, but at least I am now walking unaided and can drive again!

Sorry to hear about your tendonitis. That must have been hard going for you. My Achilles ruptured as I was walking down the garden path. I'm glad you think I've done well with the reduction. I'm sure the enforced bed rest for 6 weeks helped with it. Now that I am up and about again I intend to take it slowly. I do not want any relapses. I think my GP was worried about the hallucinations I was having - caused by the pred. of course.

I appreciate your posts on here PMRpro, always find them helpful. Thanks.

[1Purplecrow]

I have no more advice to add...but I will offer you a huge virtual hug and say you are going to come through this just fine!

High doses of prednisone can be really tough to endure, but remember that the goal is to insure your vision remains intact.

All that being said, regarding weight gain, ...If you can steer your food intake away from white carbs toward the colored ones...eg., more fruits, beets, red pepers, carrots, greens, etc., ...you will find your weight will begin to level out.

I heard all the theories about prednisone and weight gain, but the most useful remark I heard was this:

" its not the prednisone that makes you gain weight...its what you choose to put in your mouth. "

HOLY MOLY!!! I have control over some part of this PMR thing!!

Thats a pretty big thing to realize, at a time when all else seems to be going to rubbish!

So dear one, Just Sayin.....

[Mitziecat in reply to 1Purplecrow]

I agree that if you can find some level of control, even over what you eat, it may help. You just have to remember eat a healthily and give your body the essential nutrients required.

Lots of good advice and more virtual hugs out there.

[mrstrestle in reply to Mitziecat]

Thanks Mitziecat for your advice and support. Yes, you're right healthy eating is key. I don't eat a lot of meat (prefer fish) and never eat Potatoes or anything sweet because I don't like them. Just need to be more active, but not up to it at the moment.

[mrstrestle in reply to 1Purplecrow]

Thanks for this Purplecrow. I've never had a big appetite and never liked sweet things even as a child, but my appetite did increase to begin with when I was on the high doses of Pred. It seems back to normal now, but of course I'm not getting the exercise I used to. Played golf and tennis regularly before getting GCA. Haven't done that this year at all. I'm hoping the weight will return to normal when I'm more active, but can't cope with activity yet.

Thanks for your comments Purplecrow - I appreciate it. Your virtual hug made me cry!

[mrstrestle in reply to 1Purplecrow]

Sorry, my answer to you is below. Somehow it went in the wrong place.

[Jackoh]

Welcome! You seem to be doing very well despite a few teething problems at the beginning. Nothing more to add except to agree with others to take it slow from here on in to avoid any flares or problems along the way. Very best wishes Jackie

[mrstrestle in reply to Jackoh]

Thanks Jackie. I appreciate your response and your support. Judith

[Rimmy]

Hello

You are around my age and i was diagnosed about the same time with GCA (after first PMR). I thought I was tapering pretty 'fast' to be down to 14.5mg by now so am surprised you have managed to be where you are already ! I am actually starting to feel like I need to slow my tapering down quite a lot before I reach the 10mg mark which many agree is a 'good' place to sit for awhile before tapering further - basically because most of us won't be out of the woods for at least 2 years - and quite likely longer. Any cautionary comments about relatively 'fast' tapering are worth bearing in mind I think- given that this is all about controlling inflammation and avoiding unnecessary flares -although I can understand why nobody wants to be on pred any longer than necessary. Fortunately I have had no relapses of original symptoms at all - so I will be interested to hear how you go from this point on.

All good wishes

Rimmy

[mrstrestle in reply to Rimmy]

Hi Rimmy

Thanks for your reply. I am sure the only reason I have managed to get down to 10 mg is because of the enforced bed rest for 6 weeks due to the Achilles tendon. I wasn't allowed to move out of bed except to hop to the loo on one leg. Now I am up and about again I am going to go much more slowly. My GP wants me to reduce by 1 mg every month, but I think that's too much so I'm following a plan DorsetLady posted on here a few weeks ago. I'll let you know how it goes.

Judith

[Rimmy in reply to mrstrestle]

Thanks Judith - hope it all goes well for you from here on in - you haven't been having much 'fun' lately - 'hopping' isn't the best method of transport !

Best wishes