Have gone down with a bad cold and was really wheezing in the night as if I had asthma and I woke hardly able to speak. I have never had asthma before and in fact before the GCA never even a cold. Does the GCA or Pred have any effect on a cold? Pity as I have felt fairly well for several days - unusual for me. I even had a lovely visit to a National Trust property, all decorated for Christmas. Two days ago reduced the Pred by 1mg as I had put off my reduction over Christmas so I guess today or tomorrow I will feel the effects. Found Christmas very stressful - I have so many people who I give presents to and they are so generous to me - I just felt I had fallen flat and nothing was as usual. I will have to start earlier next year or try to get agreement to forsake presents. Fortunately I see the rheumatologist today so maybe will get some advice but I seem to usually go away disappointed and with little answers. Did have a lovely Christmas day with family. Wishes for a very Happy New Year to everyone.
GCA and now a coldhttps://healthunlocked.com/! - PMRGCAuk
GCA and now a coldhttps://healthunlocked.com/!
Hi Christine2715, I think the cold virus , like all others tends to hit us harder and in a more unrecognisable way because we have the compromised immune system, to me all my small illnesses have felt a bit sinister. I would see my GP about the asthmatic symptoms though. I think you outline all the reasons for succumbing to something acute in your post. You simply expected too much of yourself. I wouldn't reduce any further until this virus has gone. I am glad your Christmas was also starred about with happy memories though. Just be a bit kind and careful with yourself now. I am sure your friends and family think you are amazing. Good luck and have a very good 2017!
I too got a heavy cold for christmas (not the best of gifts) am now over the worst but left with sinus problems cant taste anything, hearing impaired dont think it has anything to do with pmr but could be wrong. my GP left my pred alone over christmas i am due to see her in the new year to try and reduce from 12 1/2 mgs. Hope everyone has a very happy and healthy new year.
The GCA/PMR per se shouldn't have any effect on the cold - but the pred might make it more difficult to fight off.
I think I would have waited until after New Year - make sure you are fully recovered from the excesses of Christmas! And it also isn't a good idea to try reducing when you aren't well - in fact, I have gone back up to 8mg instead of alternating 7 and 8 on the way down because I , too, have my annual humdinger of a cold. Kindly donated by OH for Christmas... (he caught it at the doctor's surgery last week).
Sorry to learn that you are also unwell. Hope you get better soon.
Agree with Jane, your ability to cope with minor illnesses is compromised when you're on Pred and have GCA. You just have recognise that your body cannot cope with anything much, so you need to take extra care virtually all the time. Bit of a naus, but that's life!
Hello x just a quick question I have gca and have been reduced 45gm of pred and noticed again the effect on my eyes x they are really blurred and double vision .what course of action is the best with it been holidays can't get in touch with rheumy x thanks in advance for any advice x
Hi Woodiesmum,
Can't say exactly, but looking back at your replies to others see you've only been diagnosed for a couple of months, and that blurriness and double vision were symptoms before. So maybe you have reduced a bit too quickly, you don't say what you started on - just that all symptoms disappeared when put on a Pred.
Trouble is sometimes although you have a good starting dose, the Rheumies don't always seem to let it (the Pred) get complete control of the problems before they start reducing the dose. I think someone wrote that it takes about six months in the case of GCA for the Pred to get a real hold of the inflammation, so if you taper too quickly in the first few months you are susceptible to a flare.
Did the problems return at 45mg?
I can't tell you what to do, but if it were me and if they were okay at previous dose, then I would considering going back up to that for a few days and see if they go. That will give you time to get you through the holidays -then you can discuss with Rheumy dept.
Let us know if that works.
Thanks for quick reply x I started on 60 mg a day and reduced to by the 5mg after s couple of weeks then 4 weeks but had to ring them cos I had such bad head all left side and my jaw started again so the. He said to go back but then after the 4 weeks again to drop but this has been gradual with the eye sight . I am going to put myself up and see if it helps and if it does I will stay on that till Feb when I go back . Like you say I think they drop too early and don't give enough time to get a grip of the symptoms xx I will let you know how it goes xx
Yes they are apt to.
Apart from first 2 weeks (80mg to 60mg) I only dropped 5mg every 4 weeks if I had no symptoms and bloods were okay.
I didn't see a Rheumy in the first six months, GP and I agreed on plan after getting guidelines off the British Rheumatology website - something you'd think they'd all be following!! But maybe not.
Good luck.
My first post on this site, but I've been following you all for a couple of weeks and agree with how supportive and reassuring it is to know we are not alone.
"Maybe not", Dorset Lady! I see just my GP for PMR and asked him about the British Society for Rheumatology guidelines, as he wasn't following their suggested steroid regime - his reply was "If you want to know about PMR, read the BMJ"! After reading here about the dead slow tapering regime, I've started to reduce the prednisolone from 9mg to 8mg and have worked out it should take 52 days per 1mg reduction. I could be off steroids in 15 months at that rate and I've been on them 7 months so far - but I do realise there could be hurdles along the way!
I caught a cold before Christmas and although it is a lot better, my cough sounds as if I'm a 40-a-day smoker!
I see my GP in 2 weeks (a different one from now on) - this one has arranged a bone scan (better late than never) and discussed calcium and vitamin D, which I had addressed by diet. Thank goodness that some of us are 'expert patients'!
A Happy New Year to you all.
You may well be able to speed up the reduction - some people will manage 1mg at a time using it, some will manage to start at 1 day new, 4 days old. Both measures will speed the process up considerably - you have to experiment and see how YOU get on. Everyone is different.
And never set an expected timetable! It sets you up for a disappointment. You are not heading relentlessly for zero - you are looking for the lowest dose at which your symptoms are as good as at the starting dose. That may be zero without problems on the way. It may not.
Thank you for your wise words. I have learnt that this journey is a lesson in patience!
I did consider starting the reduction more quickly, but as I'm not symptom-free, I decided not to push my luck. My shoulders and legs still ache, but no more than when I was on 15mg for 2 months and on the intervening doses over the last 5 months.
Yes some of us are 'expert' if that means long term for sure.
When I was diagnosed (albeit with GCA and well progressed) the ophthalmologist (not rheumatologist) told me I'd NEED to be on it for AT LEAST 2 years, PROBABLY LONGER , and MAYBE for LiFE.
Didn't leave me with any doubts I was in for the long haul -consequently I've never been in a rush to get off the Pred, however nasty some of the side effects can be.
I knew it was saving my one good eye - one already lost pre diagnosis - and that was my overriding motivation to "keep taking the tablets".
80mg to zero in four and a half years never going to win a gold medal, but still crossed the finishing line. 🥇🏆
You will as well, but as you say there will be hurdles - water jumps, brick walls, stumbles et al but if you keep jogging (not sprinting) on, then you may be able to manoeuvre around them!
Thank you for your encouragement. 'Expert' also means taking responsibility for our own health, which includes learning from each other.
My GP said at least 2 years, so I was prepared for the long haul.
If I was entirely pain-free I might have been tempted to reduce the Pred more quickly. I shall jog on, as you say and monitor my own progress, as PMRpro says.
Christmas was the same for me, exhausting. My daughter the nurse who I hoped would do Christmas at her home this year didn't offer. She works with dying patient's so she has a skewed marker of comparison to any other illnesses. I made it happen, grandchildren are a joy...I crashed hard for three days. Did not get out of the PJ's. Next year my goal is to set financial expectations for each Grandchilds gift we are on a retirement budget period. Interesting to me how our adult children in their late 30' and 40's don't seem to get the full picture of aging parents. Glad we have one another, )hang tight and hope all feel better soon.
You have to set the framework - ours of the same sort of age, one a nurse and one a paramedic do get it, especially the paramedic who responds very often to "Nan down" calls. The other one was "you have to get off pred, it's awful stuff" - until it was the only thing that her own daughter's asthma responded to and is what kept her alive. Then her tune changed. Nurses are a bit unsympathetic it has to be said! However - remind her that her terminal patients are not expected to do what she is expecting you to continue doing, it is a very different scenario.
We haven't done gifts for birthdays or Christmas for years, mainly because we live in different countries and the postage would buy another gift! However, each daughter gets a bank transfer which covers all the adults and children and they are told to choose a gift that everyone will benefit from. One year the nurse bought a new cooker - they couldn't afford to replace their heap, they had no idea how xmas dinner would turn out. Xmas dinner was wonderful and both the children learned to cook as a result. The paramedic usually puts it towards the family holiday - meaning they can afford to go up a level for their holidays! But there are no broken toys hiding in a corner 3 days after they were opened - and the local family provides far more than is good for them anyway.
I know - I'm a real bah humbug - but I don't end up in bed for a week afterwards and the children are just as happy.
Hi christine2715
I think the Pred makes us more vulnerable to coughs, colds n nasty viruses!
I'm on Methotrexate too so trying to avoid anyone who's ill 😷 but everyone's gone all Continental wanting to Kiss & Hug Me! 😱
I'm still wearing a wig after Chemo last year so hate it when people bear hug me, messing 'My Hair' up! 🙆🏻
I'm glad you're seeing your Rheumatologist & hopefully you have a good appointment but think you need a trip to your GP unless your Rheumatologist is a star ⭐️ & checks you over re your Chest Symptoms.
Best Wishes for 2017 🥂
Hope you feel better soon 💐
Mrs Nails 💅🏼
Doing the "kiss" the proper way is safer than shaking hands! You don't actually touch - and you can hold your breath if you want to! If I get a cold here it is via people coughing and sneezing in the doctor's surgery... (I live in Italy)
That's true PMRpro
It's the B.Bear Hugging now!
I try to pick up prescriptions when there's no Surgery, same in the Chemist so there's not queues of folks coughing waiting to pick up Meds! 😷
Thank You for your sound advice & help to others. And Very Best Wishes to You & Your Family for 2017 🥂💐
No - I really DON'T like the bear hug version - that is assuming too much...
The rheumy prescribed an asthma inhaler. Still coughing and full of cold but at least that is normal.
Hoping to be well enough to visit my Dad on January 2 nd.
Good Man your Rheumatologist! ⭐️
Hope you feel better soon! All The Best for 2017 🥂
Take it steady & Get Well Soon 💐
I can sympathise with all the sneezing and wheezing; I picked up a humdinger of a cold just before leaving Norway after visiting my daughter. I'm still deaf two days after the flight back; I assume my sinuses were too blocked to recover in the normal way. But I'm consoling myself with memories of a lovely Christmas (eating everything I wanted and not gaining a pound - and no, it wasn't all healthy!) I've promised myself a me day tomorrow before I do a repeat Christmas for elder daughter and grandson on New Year's Eve and shall not start my planned reduction from 10 to 9.5 until I'm completely better and recovered.
Happy New Year to everyone.
So it all went well (apart from the cold)? They do seem to be rather powerful this year! Doesn't matter what country!
Yes, the flight was fine; don't really know what I was so nervous about. But we had a hairy drive in convoy over blizzard stricken mountains getting to daughter's partner's family on the west coast. But once there, idyllic. Cold seems to be diminishing slightly today and I'm on my way to talk to my favourite pharmacist to see if she has some instant miracle cure!
If you find one send it over here! I've just been to the doctor - wouldn't normally but this cold seems to have descended onto my chest, leading to paroxysmal coughing which does nothing except leave me unable to catch my breath! Which is what this one does it seems! Still, I have a pack of abx just in case (to be used if it doesn't improve) and some stuff to inhale using OH's machine. Think I will go to bed and reemerge in 2017...
So when are you going back?
I am in the same boat - coughing all night. Hope you get better soon
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