Almost a month since diagnosed with GCA/PMR

Hello everyone and as always thank you for your post, encouragement and kind words. I am on 60 mg of prednisone and drop to 55 tomorrow. So far as long as I stay away from carbs and sugars I can keep the steroid rages minimized. Chronic fatigue is my biggest problem along with learning not to overdo it. I just can't get through a normal active day. If I have a day full of activities, like working, I hit the wall the next day. I can barely keep my eyes open and my muscles, especially hips and thighs just don't want to fire up and I get black lines in my right eye. Before the prednisone I couldn't walk and had horrible headaches and double vision, so I know I am making progress. It's just frustrating to read all the sites that make it sound like your back to normal once you take the prednisone.

Insomnia and high blood pressure are the side effects I don't seem to have any way to manage. I am working with the GP for the blood pressure and at this point don't want to take sleep aides. I just feel like my brain fog doesn't need anymore help.

Thanks again everyone for all the support.

Best

TJ

22 Replies

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  • Hi TJ,

    You are still on a high dose! I found 40mg stopped me in my tracks completely and 30 is not much better, so how you are having a full day on 60mg i don't know. I'm only about 8weeks into this, but have seen on the forum that people don't just bounce back; they get some blessed relief from the pain but that's only half the story. Add to that the dose is often lower for just PMR on its own, so when people seem back to normal when they upped their dose a bit, it is usually 3, 4 or more times lower than yours. Remember, some people's normal will be taking it easy but pain free, not bombing about.

    Don't forget that the Pred isn't curing your inflammation so you can carry on as normal. At the moment by having a "day full of activities" I'm not sure when your body gets a chance to cope with the steroid side effects, let alone heal itself. I say these words with ease but living by them is hard. I have a job on hold and I'm surrounded by family getting on with their lives while I live in the slow lane. Even my 80 year old live-in relative is doing more than me! Frustrating doesn't cover it.

    One has to resist the false boost given by the Pred. Sounds like you are getting the Pred boom and bust energy that comes from a body being made to do too much as well as deal with a massive shock and heal at the same time.

    It might be worth re-reading replies to your earlier posts too.

    Sorry for the sermon. Good luck!

  • Are you in UK if so your sleep will not be helped by screen use at 3am (blue light) iam 30months in to GCA and when on high dose my nights , radio4/world service trashy paperbacks from charity shops if I have got it wrong sorry

  • Olive2079,

    You are right. It is not good to sit in front of screens late at night. I do love to read and it helps. Meditation as well. Thanks. Tj

  • Hello TJ,

    "It's just frustrating to read all the sites that make it sound like your back to normal once you take the prednisone."

    Oh, how we wish that to be the case. Of course Pred doesn't cure anything but purely works to get control over the inflammation until the condition goes into remission, and that will be when it wants to not when we want it to, unfortunately.

    That's a warning to be careful what you read on online sites - very few are reputable.

    You have already become aware of earlier advice to try and take things easy and give the steroids every chance to do their job. If you work, then a period off work wherever possible, especially in these early days of treatment, has been found to help many patients.

    With regard to the insomnia, sadly that is par for the course on the very high doses, but avoiding all caffeinated drinks, including coffee, tea and chocolate, and all spicy foods can help, as can opting for lots of known soporific foods such as turkey and lettuce! If the blood pressure is purely a side effect of Pred, hopefully that will improve as you reduce down through the doses.

    So, lots of TLC and I hope you will soon feel better.

  • Celtic,

    Yes, I have given up trying to work for a while. I guess along with alcohol, carbs, and sugars, I'll need to add caffeinate to the "foods to avoid" list. I appreciate the support and learning of others experiences. It helps me not feel like a whining hypochondriac. I am pretty much the matriarch of my wonderful family and it is hard to say "No.". Even when I know it is the right thing to do.

    Cheers!

    TJ

  • I may be one of the ones who was too keen to say that Prednisalone was a miracle and I was jumping for joy to be able to walk, bend, open jars etc. on reflection it was the contrast and like you I see the progress but my week is full of ups and downs. I conserve my energy one day in order to provide childcare for my daughter the next ( I adore my two year old grandson, so he gives me magical energy). I'm wiped out the following day, napping etc.

    Today I have been found out. I had my grandson yesterday and they wanted me to have him today so they could both go to the ( child free!?) wedding of a close friend. I have woken up with knees like aching sponges, feeling terrible and I've had to let them down. I feel awful and guilty.

    I am a year in with PMR and clearly still ill. Unless something unpredictable comes up I can manage it with planning and resting in anticipation. I try not to moan to my family, apart from long suffering other half. I don't want to be dismissed from being an active grandma.

    So sorry if I contributed to the myth. We are sick and cannot, for now, live our lives as we used to.

    The insomnia for me was solved by 10 mgs of Amitriptyline one hour before bedtime. I don't feel wooly headed. Lack of good sleep makes everything much worse.

  • Sheffieldjane,

    I think you and I have a lot in common. I am only 54 and am watching my friends, many who are older by 10 plus years run circles around me. I also get the magic joy from watching my grandkids. I have 3 under age 6. I am watching them today and was sure to spend yesterday napping with no chores other than cooking and dishes. I get the part about being dismissed as an active grandma. I want to be active in their lives with tons of hugs and kisses.

    I am sorry to hear you are still struggling after a year and I will keep positive thoughts of you reaching a long remission. I used to push through pain, yet that is not a solution with these diseases as you pointed out. It's ups and downs and I will take your advice and go with the up and down flow planning.

    Also you maybe right. A good nights sleep might be the best option verses sleep deprivation. I'll talk to my doc.

    Enjoy your grandson, they are magical!

  • Hi Tj2017,

    No way are you, or any of us "back to normal" as soon as you start the Pred! As others have said, you still have the underlying condition, Pred is only controlling the inflammation.

    I think what we mean, certainly those where it took a long time for diagnosis, is that once we have started medication we are no longer in excruciating pain, and although very often fatigued, we can at least function again. That's why we say, pace yourself, and I appreciate that's very difficult whilst you are still at work. I think most of us retirees have the utmost admiration for those of you still working - I don't think I could have done it with my GCA.

    Blood pressure can be a problem, but so long as it's being monitored regularly and not getting out of control then it should settle back down to normal ranges as you reduce the Pred. Hopefully, so should the insomnia, I was like you on higher doses, but again as I reduced Pred that got better. It doesn't for all, but I think that may depend on how your sleep is naturally. I found if I took one Nytol about every fourth or fifth night I could cope - Dr approved. That at least gives you one good night's sleep without getting hooked on another tablet!

    Just as an aside, I've been off Pred 8 months and hopefully GCA free for longer, but if I do too much, like this week, having to supervise builders in son's house, driving 50 miles a day for 3 days I still feel shattered. Fell asleep for 2 hours on the fourth afternoon after shopping! Mind that could be age - or arthritis!

    Take care.

  • Thanks DorsetLady, you are my hopeful inspiration that there is a light at the end of the tunnel. Wonderful news for you and your family.

    My blood pressure was fine until the prednisone. So I am hopeful that will work itself as I taper down.

    I have applied for disability. I have 3 doctors that said I should not be working so hopefully it will be approved. It would be nice to be able to spend the "up" times with my family rather than working.

    Take care and thanks!

  • Hi again,

    As you rightly say, your blood pressure should go down again as you reduce Pred.

    Good luck on your disability appeal.

  • Wow congratulations on being off your preds !!! I thought you were still on them, hope for me yet then one day ! My 7.5mg one day and 7mg next two days not working, so Monday every other day once again ( boo hoo )

    Fed up with my muscles, knees, hips and every other thing that goes with it now, even GCA trying it's best to bug me.

    Oh well ,...

  • Sorry to hear that, but as we're always saying around 7mg is quite a difficult level to get through - adrenal glands needing to start working again.

    Might be worth try the following plan to see if that helps, if not you might need to follow the DSNS plan -

    1st week - Sun & Thurs new dose

    2nd week - Sun, Tues & Thurs new dose

    3rd week - Sun, Tues, Wed, Thurs new dose

    4th week - Sun, Tues, Wed, Thurs & Sat new dose

    5th week - all week new dose

    Good luck.

  • Thank you , I will follow that plan ! I get my pills ready for next. 2 weeks today. I also take blood pressure pills, metformin, omeprazole, 40 mg atorvastatin ( doctor doubled my dose ) now tired all the time with them ! And 25mg amytriptyline. I rattle lol

    Last night I was very frightened as had weird feeling in head where they did biopsy 3 years ago, it was like a pulsating feeling which I have never had before, thought something was going to happen to me so went bed early !! Thank God for this forum and people like yourself, better than any doctor!!

    Thank you Dorset lady so fingers crossed again x

  • Yes agree with the shake, rattle and roll!

    I also take BP tablets - long before GCA, but pleased to say since coming off Pred have reduced them (whoopee, small victories) - Statins (again pre GCA), Omeprazole & Adcal (GP suggest stay on last 2 for time being).

    But, as I've said many times, most people over 50 are on some sort of medication, so no great problem!

    Take care.

  • "I just can't get through a normal active day. If I have a day full of activities, like working, I hit the wall the next day."

    I have PMR, I am on a low dose of pred - I can't do that, even now. GCA is a serious systemic illness, all the pred does is manage the inflammation - like taking honey and lemon soothes the sore throat in flu, it doesn't CURE real flu. You wouldn't expect to be able to do a "normal" day's activities with flu would you? Even a severe cold would leave you struggling.

    There are still doctors who live in a parallel universe who will tell you "take pred and you'll be back to normal". No - GCA is, as I've said, a serious systemic illness. Pred is a powerful drug with side effects at any dose, at GCA high doses like 60mg you should be off work, resting and behaving as a poorly person. You have to give your body a chance to heal.

  • PMRPro,

    What a great analogy! You are right, comparing the relief from a sore throat from a lozenges or such to the relief from prednisone. The underlying flu didn't go away and neither did GCA. I think I am just a little better at curing myself of the flu than I am of the GCA/PMR. I am still learning and probably will for some time on how to manage the Ups and Downs until remission.

    I think we all agree it is frustrating to read and learn many of the folks in the medical industry minimize the pain and difficulty associated with these diseases, especially since they don't really have many studies on how the disease progresses before someone is diagnosed. They could of been ill for years with substantial damages. I suspect my mother had this disease about the same age as I am now. Unfortunately she was a smoker and they blamed her smoking. I am sure the smoking made the disease progressively worse.

    Thanks again for sharing!

  • Hi Tj2017,

    As with all of us on prednisone, insomnia is just a fact of life now. At first it was annoying, but then it just became expected until I dropped to about 11 mg and then it improved. I didn't fight it, but just got up and was able to get much done at the early hours. By noontime I was ready for a nap of about an hour and that got me through the day.

    As for the black lines in your eye, I suggest you see your eye doctor to check for a torn retina.

  • Ginnyma,

    I think you are right it is not best to fight the insomnia. So of course it's 5:00 am here in California. I just took the prednisone and will try to get a few more hours sleep. Afternoon naps are becoming a fact of life as well. At least I hope as it sounds like it will get better as I taper.

    All in all I am significantly better and would fight anyone who tried to take my steroids away.

    I did see the eye doc and my eyes are looking good. It is just in the afternoon and if I do too much the blood flow gets constricted, especially if I am late taking my afternoon dose of prednisone. I take 40 in the early am and than the balance around 2:00 pm.

    Cheers!

  • Wow, I could have written this post! I've taken myself down to 55mg from 60mg as just can't bear being on this high dose, one more day before I see the consultant! I worked for a few hours on Friday and went round to friends just for a chat and a bit of food, left at 10pm but have barely been able to move today through sheer exhaustion. Felt absolutely dreadful this morning.

    Currently sat listening to everyone else in the house being busy and trying to shake off the guilt....

    Be kind to yourself x x x

  • No guilt - it isn't your fault you are ill...

  • Trixiechamp,

    Sounds like we are on a parallel path. Thankful for this forum. I am happy to share my experience on this unplanned journey. Hopefully we can help each other. I just wish it was a marathon instead

    Cheers And I hope you get some sleep.

    Tj

  • I will keep you updated as to what Dr Hughes says tomorrow...I've almost still got that 'it's all in your head' thing going on as GP said it was all due to my age for so long...and to still now be told 'your symptoms are unusual, I'm not sure what's going on'! I will be a relief to see what his take on it all is....either way! I've printed out a timeline of my symptoms and my blood results although no markers, having looked through it all now I know I could almost certainly say, this lady has atypical PMR..

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