GCA,

[grandmother7]

Hi I am 73 yrs old,diagnosed with GCA in sept 2016, have become diabetic due to steroids, blood pressure high, fatigue and find aggression a problem, really struggling, GP excellent also hospital but worst is trouble breathing which consultant said is prednisilone!! Should get better as they are reduced apparently,

[SheffieldJane]

Hi grandmother7,

Are you new to this site? If so welcome!

I was diagnosed with PMR in March 2016. I do remember a sensation of there not being enough air in the room with Prednisolone, initially. This horrible oxygen starvation has thankfully passed. I found it frightening, especially as my blood pressure is on the high side, and I tended to think that it was my heart, which was checked out and found to be normal. I know thinking about it made it worse, so there was anxiety in it all. I liked having a portable fan blowing in my face and I always sleep with the window open. As I say it passed, to be replaced by less scary effects, urinary at present, going all the time, hopes it's not type two diabetes, I get really thirsty.

I can relate to the aggression too. I seem to have a very short fuse and blow up. Afterwards it seems like an out of body experience. I am normally as placid as a grazing cow.

Have you been on steroids for long? You seem to be hit with all the dreaded side effects.

Glad you trust your doctors. Not everything we endure is GCA or Prednisolone related and things can be missed.

Do you have 7 grandchildren? I have 3 and one on the way, they are the source of much joy!

[grandmother7 in reply to SheffieldJane]

Hi Sheffieldjane, yes I do have 7 grandchildren aged 19 to 26 yrs old. I went on steroids in August 2016 when blood test suggested GCA later confirmed by biopsy. I do seem to have every unpleasant side effect possible, and this week reduced steroids to 26mg started at 49mg dont know if coincidence but felt so ill. Insomnia is a real bugbear, dont go to bed anymore just doze if and when I can. spent the early hours today baking cakes. normally very active pushing myself to achieve normal standards is so frustrating. feel so sorry for my husband as i wouldnt be as accepting of my "blow ups" as he is. Would have left home by now

[SheffieldJane in reply to grandmother7]

Hi grandmother7, I am troubled by insomnia too and have been prescribed Amyitriptilin (sp) 10 mgs to be taken an hour before bedtime. I now wake just once always at 2.30 am. The sleep outweighs yet another drug! I look better too. Mind you the family would miss the cakes I'm sure.mUnless you eat them too, I wouldn't blame you!

[grandmother7 in reply to SheffieldJane]

bless you, thought while making them I must be mad! Having to watch what I eat as become diabetic through steroids and on metformin, so although they look lovely cakes keeping 2 for hubby and others going to daughter and family

[PMRpro Ambassador in reply to grandmother7]

"normally very active pushing myself to achieve normal standards is so frustrating"

You really must learn to pace yourself and rest rather than pushing yourself. Part of the reason you could do it at first will have been the pred - it can make some people like the Duracell Bunny - but as you reduce the dose that effect fades. The fatigue is part of the underlying autoimmune disorder that causes PMR and GCA symptoms. GCA is a serious illness - rest really does help,even if you can't sleep.

[grandmother7 in reply to PMRpro]

do understand the sense of this, been doing property up since oct 2015 and since this GCA have struggled. I try to pace myself and be sensible but that is the frustration I refer to as there is time scale to prepare for other people to come and assist us. Do not want to hold them up as almost at the finishing post {hopefully 2_3 weeks only} looking forward then to resting up and getting fitter, Also I was Duracell Bunny long before taking pred. That was a shock adjusting to slower pace.

[PMRpro Ambassador in reply to grandmother7]

It is for most people! But turning into a Precious Princess can often help recovery - or at least you feel far better and get to a lower dose of pred.

[Deb61]

Hi Grandmother7,

I have seven grand kids, am 61 and developed GCA in Sept 2015. I have also become diabetic due to the high levels of pred, and ended up in the hospital for a few weeks last Christmas my blood sugars were so high. I have terrible fatigue and breathlessness as well. Very scary when you feel so bad. As i reduced down the diabetic got under control and currently taking 1000mg of metformin twice a day. I got down to 5mg of pred but then had a bad flare and back up to 20mg now for last two weeks sugar levels going up again but feel much better, headache is almost all but gone, face is still swollen and my jaw still sore so expect i will again be able to reduce but doc wants a much slower reduction for . I am from Canada and sure do enjoy my 7 grand kids. I hope you feel better.....

[grandmother7 in reply to Deb61]

Just realised your dosage of metformin Debs, my blood sugar readings ( have appt thurs so take 3 days for gp) are no better since starting metformin but will speak to her as on much lower dose than you are 500mg once a day. Having said that only put on them 2-3 weeks ago also aledronic acid (weekly tab) and one of them definately not agreeing with me. So will be getting more info thursday i hope

[PMRpro Ambassador in reply to grandmother7]

What sort of "not agreeing with you"? And have you had a dexascan to see if you REALLY need the alendronic acid?

[grandmother7 in reply to PMRpro]

No havent had any dexascan or even blood test? Just GP said I needed to be on aledronic acid for bones. Not taking next monday, first 2 doses felt very nauseous and not well at all, but didnt connect with Aledronic acid but this week had same plus itching all over body about couple hours after taking. Could have ripped my skin off so severe. Took extra allergy pills and showered & put eurax itch cream all over skin. Eased after about hour

[PMRpro Ambassador in reply to grandmother7]

Then tell your GP that whatever you are taking, you aren't taking them! Here is a link to the patient information leaflet,

medicines.org.uk/emc/medici...

No4 says:

"All medicines can cause allergic reactions, although serious allergic reactions are very rare. You should stop taking Alendronic Acid 70mg Tablets and tell your doctor immediately if you get any of the following symptoms:

- sudden wheeziness, difficulty in breathing, swelling of the eyelids, face or lips, rash or itching (especially affecting your whole body). This is known as ‘angioedema’.

- a rash, blistering or other effects on the skin, eyes, mouth or genitals, itching or high temperature (symptoms of severe skin reactions called Stevens-Johnson syndrome or toxic epidermal necrolysis)."

You have had one episode of rash - don't risk another as it could be more serious if it is an allergy.

And he must check your calcium and vit D levels before insisting you take any bisphophonate. If either is low - it doesn't work and it isn't worth taking them. They must be sorted out first.

I can't take an ACE inhibitor for my blood pressure - big red label on my notes "ALLERGY"! Really important to know and keep a note of.

[grandmother7 in reply to PMRpro]

Thank you for that information PRMpro definately not prepared to go through that again.GP said 9 days ago didnt need to see me again until after next rheumotologist appt middle of January but will advise surgery not taking alendronic acid tomorrow so gp aware, probably will need to see sooner as feet and lower legs suddenly swelled up now, never had this before either. This is a strange illness for "first time ever complaints "many thanks for your help

[PMRpro Ambassador in reply to grandmother7]

People do also complain of fluid retention with AA - whether it is coincidence or simply something people don't make a fuss about I don't know. If it isn't reported - it won't be recorded.

[grandmother7]

Thanks Debs61, I agree it is so scary being breathless, keep thinking I am having a heart attack, really wish it could have been anything but this GCA, seems to be so many side effects as bad as the disease, and as you say even after the reductions of pred they sometimes need increasing again uphill battle and getting weaker all the time, it seems lately. Must stay positive though, i hope you soon feel better too

[DevonMichael]

Just to say you are not alone on the mood swings! I was diagnosed last June with GCA and started on 40mg and my wife had to put up with a lot. I was very snappy and was wide awake at 530am but she knew it was the steroids. Now I am on 15mg have slowed down, get up later and my wife says I am back to normal with my temperament .

Good luck with your recovery.

[grandmother7 in reply to DevonMichael]

thanks for your reply that gives me hope things will improve, my insomnia is dreadful, 2 hrs maximum sllep and that is usually in 2 blocks For the first 6 weeks or so I wasnt ever tired but now seem to be more fatigued daily, can only improve though. hope you continue with good progress

[nuigini in reply to grandmother7]

HI Grandmother7 and other fellow grannies. I sympathize with all the comments on breathlessness which I felt while on higher doses of prednisone (started on 40 mg in March 2014 at age 65, now at 11.5 after two flares). If I recall correctly, they happened when I was lying down. I can’t recall when the episodes stopped, but they did. Now, I’m only dealing with shortness of breath caused by the added weight and my level of fitness, which is in need of serious improvement.

I too had sleepless nights and had to resort to medication to help, as much as I fought the idea initially. I’ve always needed between 6 to 8 hours of sleep to function properly. I also recognize the importance of sleep to the body healing process and being able to cope with life during the day. After pushing back on my practitioners recommendation for weeks I finally bought into sleep medication. I took 7.5 mg of Zopiclone until June 2015 when I had reached 15 mg (for the first time) and had no difficulty coming off the medication. I simply stopped. While on Zopiclone I was able to get 5 or 6 hours of sleep. Presently I'm good for 6 or 7 hours a night with 1 or 2 trips to the loo.

Also had to up my blood pressure medication as my usually moderately high BP went through the roof with prednisone.

No issue with blood sugar so far. I test myself regularly and have tried my best to limit carbs. Fortunately, I've never craved sweets.

As for the mood swings, they’re definitely there from time to time. Most days I’m pretty calm and positive, occasionally I have low mood days, and on other days I feel like I could bite someone’s head off with the slightest provocation. Fortunately, the latter mood doesn’t happen very often and I simply say to my husband “I’m having one of ‘those’ days” so he knows not to take anything personally and to stay out of my way, or just give me a hug now and then. I think the mood swings are mostly caused by the prednisone at various stages of the reduction process.

Fatigue haunts me regularly, some days it's totally debilitating. From all I've learned on this and other sites, the culprit is either the disease itself and/or the prednisone. I try to go with the flow and have accepted that I have to pace myself. I try not to sit for more than and hour at a time and even on the days when I feel like doing nothing I force myself to get up and do something. On days that I'm feeling "PMR good" I'll do more challenging things throughout the day, but again recognizing the importance of pacing.

I live in the Northwest Territories in Canada and travel regular with my husband to our home in Panama. We have 3 grandchildren, one son in Alberta has 17 year old daughter, and our other son In British Columbia has a 10 year old boy and an 8 year old daughter. I'm usually in BC once or twice a year looking after the grandkids while Mom and Dad are away.

As you can see, I haven't let PMR stop me from enjoying travel and sharing life with the wonder and blessing of grandchildren. Travel and changing environments are a often a challenge. I accept that these things may impact on my journey to remission and that often leads to a great deal of frustration on my part in terms of figuring out what's going on with my body on any given day and whether to continue at a dosage, or press on with the Dead Slow Nearly Stop reduction plan that I follow.

This is a rather long winded response, which is unusual for me.😊

Good luck on your PMR journey. Please be careful with the speed of reduction. There are numerous helpful posts on the topic and I encourage you to seach them out.

[grandmother7 in reply to nuigini]

thanks nuigini, found your reply very helpful and infotmative, good to speak with people who have understanding and history of this condition. Helps to know of someone who has had similar side effects and now improving too