living with Giant Cell Arteritis with PMR and large doses of Prednisone.

[Glennda]

How can I make this disease less debilitating? I am only 66 years old.

Are there ways to mediate the side effects of the prednisone?

Is anyone in the community experiencing this disease post chemo cancer treatment?

[Hindags]

Welcome. So sorry you have joined this club.

Many of us here ask the same primary question. How can I manage this condition in a way that minimizes the long term effects of Pred? How can I manage this condition and still have my life?

There are lots of resources on these forums and you can search for topics.

There are some things that many of us do and or try to do:

Diet: very low carbs from grains and little or no added sugar help avoid weight gain and is said to help Pred work most efficiently.

Pacing: it is important not to overdo. If Pred works well for you, you'll feel pretty good. It is important to Pace. PMR is an inflammatory condition and stress, both good and bad can exacerbate symptoms.

Meds: Some MDs may prescribe other meds to control blood pressure, blood sugar, high cholesterol and bone loss. Not everyone needs these. Everyone is different when it comes to Pred side effects. Some new research suggests that the long term effects of Pred as it is prescribed for PMR really are not nearly as grim as has been reported.

Exercise: Low impact exercise is good, but don't push yourself. It is important to try to keep up muscle strength and stay limber, but be measured. PMR may make you slower to rebound from exercise. Splurging on massage, physical therapy, or osteopathic manipulation may help keep you moving.

Confusion: Many of us take a while to sort out the effects of Pred vs the symptoms of PMR especially when we start to taper the Pred and experience symptoms of Pred withdrawal. This forum is very helpful. Ask away.

Tapering: There are many different approaches to tapering Pred once your symptoms are under control. The best advice is to work with your Dr, while honoring your own sense of what feels right for you.

All this will make more sense as you move through your own PMR journey. Others will be along shortly to give you more information.

I'm sorry to hear that you have just finished cancer treatment. That is too too hard. I haven't any help for you with that last question.

[Glennda in reply to Hindags]

Thank you for your understanding and suggestions.

I would really like to talk with someone with GCA. I am 2 months into treatment and still have not met or spoken with a single person who has or has had GCA. I live in Canada.

[PMRpro Ambassador in reply to Glennda]

Where are you? We have a few Canadians, not sure if they are GCA though.

[jeannette65 in reply to Glennda]

Hi Glenda I have had GCA for 3 years. It’s a slow road but eventually it does get better. I’ll try to answer any questions you have it’s all very confusing but you are on a fabulous web site. I have had excellent advice and support over my 3years. Really don’t know what I would have done without the help from friends on here. The consultant and hospital don’t tell you much you need find out yourself that is why this forum is so good.When I was first diagnosed I felt very alone, didn’t know anyone who had it or had even heard about it. But the more you get into it you will start to understand what the beast is and what to expect. Please ask you questions and I’ll answer what I can. X

[Glennda in reply to jeannette65]

Thank you so much for taking time to send me a note! I was diagnosed on August 13, 2017 and you are the first person I have communicated with who has had this disease. Like you I had never heard tell of this disease. Did not have a clue what it was about!

At the beginning, I really struggled with the prednisone, especially psychologically. Now that is much better. I am down from 60 mg to 40 mg of pred.

I still have pain in my jaw and my head is sore. Sometimes I still cannot lay on the side of my head where they did the biopsy. Did you experience this?

My face is extremely swollen and my sinuses are affected sometimes.

I do have tablets to help me sleep and when I sleep well, everything is better! However, it took a while to get those.

The PMR causes me to not be able to drive a lot of days or at least I cannot drive too far.

Bending over and moving too quickly causes dizziness. Have you found any relief or help for those symptoms?

What are you doing for exercise? I need to get more active in order to stop the weight gain, but Yoga and Tai Chi are out of the question right now.

The overall fatigue is profound. I am struggling to keep up the house and meals, let alone do much else, but am trying to get out and about once in a while.

Thank you for your help.

Glennda

[jeannette65 in reply to Glennda]

When I was first diagnosed I was put on 60 mg of pred. Had temple biopsy next day(and yes it’s still painful at times) and had 2 days of high steroid infusions and then continued on 60 a day. 3 weeks later I lost use of my legs and MRI scan showed 2 fractures of the spine. I was so ill at the time nothing seemed real and I drifted on a haze.Like you the fatigue was a nightmare but you MUST pace yourself. I found I had to take one day at a time and even now although I’m so much better I can never really plan anything it all depends on how I feel when I get up. I enjoyed yoga but there was no way I could carry on with it.I tried to exercise and made myself quite ill for 4 days if you do too much you suffer for it.This illness just will not be rushed. I could not drive for 2 years I was taking so much meds my head wasn’t clear enough. Yes I’ve been dizzy at times but as the pred lowers it does get better. There is a very good book by Kate Gilbert PMR andGCA a survival guide it was very informative you can order it from Amazon.Please feel free to message me anytime even if you’re just feeling down been there done that so I know how you feel. Things will get better they will never be the same as it was but you will get there keep your chin up x

[PMRpro Ambassador in reply to Glennda]

" I need to get more active in order to stop the weight gain" - you can start to do something without being able to exercise much. When on pred cutting carbs drastically really does help a lot and also reduces the risk of pre-induced diabetes. I lost 35lbs that way - and when the weight started to go I was using crutches and could barely manage into the village, about 200 yards. Even the short walks I could manage helped with the fatigue though. The weight loss was slow - but steady.

If you can't manage the house/cooking and have anything left for yourself - then cut the household tasks. I mean it - a bit of dust hurts almost no-one and it is very patient!!!! In fact - eventually my husband notices and cleans the bathroom and his study himself! He wouldn't do it if I asked though.

[Mikb in reply to Glennda]

I have GCA. Diagnosed in June of this year. I live in Toronto and would be happy to communicate with you.

[Glennda in reply to Mikb]

Thank you! I live about 35 minutes east of the Kingston, so not so far away.

How would you like to communicate? Would you do a phone call to start? I have facetime if that helps. Also, do email and text and this blog.

I would be interested to know the symptoms which lead to your diagnosis and how you were diagnosed. What level of prednisone were you started on? What level are you on now?

Thank you so much for agreeing to communicate with me.

Glennda

[Mikb in reply to Glennda]

Check my profile for symptoms and dosages etc. In the mean time, I will email you and we can arrange to talk. I am even willing to meet you half way (an hours drive?) to meet face to face. Looking forward to talking to you.

[PMRpro Ambassador in reply to Glennda]

Glennda: Please remove your personal details - this is a public forum, anyone can see it. To edit your post, click on the right hand box with the downward pointing arrow - that brings up the options Edit, Delete or Report.

Use private messaging instead: to send a private message click on the name of the person you want to contact in one of their messages. That will bring up their profile page. At the top right corner you will see a box with Message - click on that and you get a message box which only they will be able to see.

[Glennda in reply to PMRpro]

Thank you so much for sorting me out. I have edited my post.

Glennda

[Rugger in reply to Glennda]

Glennda

Try again, as I can still read all your personal details. Don't forget to click after you've deleted the details - I forget what the box is, but it might be 're-send' or something similar. (It's the green box 'Edit response')

[Glennda in reply to Rugger]

Thank you. I have a message now which days succesfully updated.

[PMRpro Ambassador in reply to Glennda]

And it is!!!!!!!! I'm happier now

[SnazzyD]

Welcome. It is very scary and confusing when you are pushed out with he diagnosis and very little information, so read lots on here. This site saved my sanity. Much of it is learning your own body signs and working out what is withdrawal, what is side-effects and what is flare of the disease, so it can take quite a few weeks/months. What dose are you On? Which bit of this planet are you from?

How long since chemo?

[Glennda in reply to SnazzyD]

I live near Kingston, Ontario, Canada. Was diagnosed in mid August.Two years since chemo.

[DorsetLady PMRGCAuk volunteer]

Hi Glennda,

Welcome.

You’ve been given good advice by hindbags, but it is all a bit overwhelming to start with, and even more difficult after chemo treatment.

High doses will make you hyper active for a while until your body gets used to all that chemical cortisol rushing around your body, so sleep is probably difficult. And that just makes the days more difficult. If you have difficulty in sleeping try a sleeping tablet every few nights just to ensure you get some decent sleep, but don’t take every night, easy to become dependent. Hopefully that will soon pass, then you come down with a bit of a bump, and you have to learn to pace yourself - some days you will still feel good, but don’t do too much, or you’ll suffer for it the next day.

Pred does have lots of side effects, but what drugs don’t, but that doesn’t mean you’ll get all, or even some of them, and those you may get can be controlled.

Life does go on, but you have to do it in the slow lane for a while, delegate to others when and where you can, and give yourself a bit of TLC.

[PMRpro Ambassador]

Accepting there are limitations you will have to accommodate for a while is a help - the pred does part of the management but you have to do your bit too. There is no point wasting energy fighting something you cannot change - far more to the point to devote that energy to coping strategies.

This may help get your head round it all:

healthunlocked.com/pmrgcauk......

[HeronNS]

I don't know if this organization might help you find someone close to where you live:

vasculitis.ca/

[HeronNS in reply to HeronNS]

facebook.com/Vasc.Canada

[Spanky2019]

I was diagnosed with gca in April 2019. It's been a very rough road, and there were times I wasn't sure I'd make it to the next day. I was on 80 mg prednisone 2 or 3 times for a month. BTW, I am 66 yrs old, was very active. A couple weeks after gca diagnosis I was dx with osteoporosis. Couldn't believe it. Anyway, this forum was so helpful. I also had a good primary dr & a good rheumatologist. I live in northern US; not far from Canada. Things got better when I finally figured out that rest was not the enemy. I'm still tapering prednisone and have been on Actemra for a couple months. Things seem to be getting better. It's a very strange disease. So many seemingly unrelated symptoms always popping up. But things get better. Probably need to find a new normal. Just have to take your medicine and treat the disease whatever length of time it takes. Patience is definitely a virtue. Good luck to you. Treat yourself kindly. Stay safe.