Weather!

'No aches and twinges' - except for a couple of days here and there I can't remember such a time!!!  

Home made iced lemon drink helps.

Have a 'cool' day, if possible.

C. 💐

Luckily this heatwave is DRY!!!  I'm OK in 24-28 degs, but for the last few days we've had 30 - 34 degs (and that is expected to last for quite a few days)?!!!  Never really known such heat here in the North Rhein area, or in England for that matter!

Sorry about having a moan.  I certainly wouldn't like to live in parts of America/Australia/Africa (all As?)

C. 💐

Constance, we had 36C+ (98.6F) here where I live near to Heathrow yesterday - a record breaker.  Slightly cooler here today but strangely I feel hotter!  Higher temps expected again tomorrow and onwards.  I'll join you in apologising for having a moan about it! 

I have been barely able to function these last two days, the heat just wiped me out and turned me into a soggy pile on the floor - haven't been as bad as that in years.  Better today, but little rain and I can feel the temperature creeping up now.

I've found that using wet wipes all over and then drying by evaporation helps cool me, but I do the hands in cold water trick too.

I think I'd like the cold water trick all over my body, but I haven't got a bath!!

Head sweats and subsequent itchy scalp are back - thought that might be a thing of the past now off steroids.  Having difficulty functioning too but I guess that may be something to do with new BP pills (beta blockers).  The wet wipes sound a good idea - do you keep them sealed and in the fridge perhaps?

What a good idea!

MrsO, I too am now off steroids after being on them for 2 years.  It has been 9 months now since I stopped taking prednisone.  I still have issues like pain here and there as well as severe hot flashes.  Since menopase, I have not suffered from the heat like I do now.  It is exhausting to the point where I feel like I am going to faint.  I live in Canada but have wondered if the dryer heat (like that in Arizona might be more tolerable).  My question to you MrsO is do you still suffer from some pain (particularly in the buttox when you sit for too long?).  If I sit for a long time as in front of the computer, when I try to get up, one particular cheek gets pins and needles and eventually real pain.  I asked both my GP and my Rhemy if I should go back on prednisone and both said "no, unless absolutely necessary".   All the pain, etc. seems to be on my right side.  Have you or anyone else felt pain in addition to the sweats?  I would certainly appreciate hearing from anyone that might share the same experiences and wondered whether to go back on steroids.  Thanks in advance for your help,.

Linda, no I don't suffer from pain or pins and needles in the buttock area.

You are just 9 months post-steroids and it can take a year or more for our bodies to totally recover after coming off steroids so you still need to take special care of yourself at this time, keeping stress (both physical and emotional) to a minimum.  A couple of ladies who used to post on this forum have experienced two bouts of PMR and both admit that they really overdid things between the two bouts, with one doing quite physical work on her land.

If your one buttock is the only area that is affected, and being one-sided then hopefully both your GP and rheumy are correct in feeling that Pred isn't necessary.  However, have neither of them suggested investigating the problem?  Perhaps there is something like a nerve getting trapped on sitting which could be sorted with some physio.  Even a steroid injection may help.  A lot of people are finding that Bowen therapy is helpful for certain pain - perhaps worth looking up to see if you can find a Bowen therapist in Canada.  Both Nefret and Lodger who post on this site have experience of Bowen and will be able to tell you more.

If in spite of trying any of the above, your pain continues or worsens, then it may raise the question of a return of PMR, in which case perhaps a small trial dose of Pred will provide the answer.  Good luck - I do hope it doesn't lead to that. 

Thank you so much MrsO for your kind words of encouragement and for your suggestions.  I have had scoliosis (curvature of the spine) since early childhood and had some corrective surgery at age 10.  As we all shrink or so it seems as we age, my GP sent me back to my orthopedic surgeon to ask his opinion.  He wasn't very helpful but when I insisted that there must be a reason, he did say that as we age, the discs around our spinal cord do shrink and that "yes, it could be that".  I am going to see a neurologist in September because there have been other signs/symptoms on my right side.  

I certainly appreciate you mentioning that it takes a year or more post steroids to feel more like oneself again.  I am definitely going to look into Bowen therapy because there is a centre that specializes in it here in Ottawa.  It is certainly worth a try.  

I am truly grateful to have connected with you because I often wonder if I am worrying over nothing.  It is nice to know someone who has gone through this and has come out on the other side.  May I ask you how long you have been off steriods and if you still experience pain of any sort?  Is there another website as support for those who had PMR but no longer take meds?   I will definitely try to take special care and keep my stress levels down.  Once again, thanks for your reply. 

Linda, any spinal problems can complicate matters when suffering/having suffered from PMR.  I know from experience as I have a slippage of my lower spine (Spondylolisthesis).  It can go inso spasm from time to time and I suffer bouts of sciatica, often from doing something simple like going over on an ankle.  I'm surprised that your orthopaedic consultant didn't suggest an MRI to back up his theory.  Hopefully, your neurologist will be more helpful.

Any aches or pains that appear now are not reminiscent of PMR but are more likely due to my spinal problem or to Anno Domini - after all, I am 10 years older than I was when PMR first reared its ugly head.  I have been in remission and off steroids for 3 years now.  There are a couple of other forums where PMR/GCA sufferers, past and present, post.  One is the HealthUnlocked pmr gca uk forum set up by the Charity, PMRGCAuk, and the other one set up by the pmr gca north east group/Charity.  The latter have a special section for those who post when they reach remission and are on zero Pred.  This section was included at the suggestion of a wonderful gentleman from Sweden, called Ragnar.  He still occasionally posts here, and it was he who very first suggested a very slow tapering regimen for those who repeatedly had difficulty in reducing their doses below 5mg, a common sticking point for many.  After failing so many times to reduce below 5mg, he thought he would try just reducing on a couple of days for one or two weeks, gradually increasing the days at the new dose.  It proved successful for him and I believe I may have been one of the first people to follow his example below 5mgs, only even more slowly, in fact at a snail's pace, but it worked for me too, and a couple of variations on the theme are now working for many people, even being found helpful for those who have problems reducing from even higher doses.

Someone else told me a few days ago that she, too, would like to see more posts from people for whom PMR/GCA has gone into remission and who are off steroids.  Perhaps, the moderator would consider setting up a similar section - a Zero Pred section, perhaps available by clicking on a link under the pinned threads.  

Meanwhile, Linda, do continue to post here so that others on their PMR journey can see that there is light at the end of the tunnel, where they will find us waiting to welcome them! 

Mrs. O, I cannot thank you enough for taking the time to reply and for providing your thoughts on what may be causing my spinal problems. My orthapedic surgeon was rushed that day and I had to almost lasso him to come back from the doorway to even answer a couple of questions.  When I suggested that it might be the fact that I am shrinking with age, he then agreed and explained about the protective discs around my spine might be shrinking and therefore putting pressure on my vertabrae.  He, however, never offered any treatment or follow up.  

You have given me hope because when I see the neurologist, I will suggest an MRI if she does not come up with the idea herself.  If it is something that I need to expect and tolerate as I age, so be it but it is the fear of not knowing the cause that makes me uneasy.  

It would make sense because all my recent problems affect my right side.  I started having pins and needles in my upper right leg shortly after I stopped taking the steroids.  I attributed this to the fact that I had just stopped my medication.  Then, a few months later, I started having a feeling of blood or fluid running down the back of my head (again on the right side) and the pains in my leg subsided.  This was when I asked for answers and my GP decided to send me to a neurologist but I have been waiting 6 months for an appointment.  Anyway, enough about this but, if you think it might be helpful to others, I will post the outcome of all this mystery once I get some answers.  Who knows, there might be someone out there that has issues similar to mine.

Getting back to PMR/GCA, when I first came across this site, I did not realize that almost everyone was still on prednisone and continuing their fight or journey with PMR/GCA.  After my first entry, someone wrote that this was the wrong site for me but did not give any suggestions as to where I might belong.  I have remained a "silent partner" if you will and have continued to learn so much while reading the various posts.  I can honestly say I am glad that I did.  

I appreciate you mentioning that, for the first year at least after being off prednisone, I can expect possible side effects or reminders that I am still suffering somewhat from PMR.  I also appreciate your advice that we must still take care of ourselves and not overdo it or we may have to deal with a second bout of this illness.  I still feel very lethargic and have come to expect this as the "norm" for now at least.  Small price to pay after the long journey to remission.  My advice, to those still fighting this challenging condition, is don't be too anxious to get off prednisone.  I think that I did and subsequently still suffer some days.  Recognize the signs of pushing too hard and take the necessary time to rest and recuperate.  The good news is remission is out there!

p.s.  Mrs. O, I totally agree with you that it would be very helpful if the moderator would consider setting up a Zero Pred section for those of us who are in remission and off steriods.  Something perhaps available by clicking on a link under the pinned threads.  

Please don't leave us.  We just love to know and listen to people who are in remission - it gives us hope.

Constance 💐

Thanks Constance!  I will definitely keep all of you up to date on my journey!  There is definitely hope for all of you.  Some may take a little longer but you will all get there eventually.  Thanks for making me feel part of this great groupl.  

 

The problem (if it is one) is not that there isn't a "section" for people who are off pred but that for many people they don't want reminders of PMR once they are back to their more normal lives. It is something that some of us have made our "voluntary work" if you like - otherwise the forum would only be the people still in the earlier stages of their PMR journey, fearful of what is going to hapen to them with this unknown illness and poisonous pred. I know though that there are a few people who still have PMR and problems but have managed to get their lives back on a much more normal track - and feel much less need of support as a result. It is the people who are still exploring how to live with PMR who have most need - once they have worked that out they then go away and get on with life.

Hi MrsO/Linda,

I would've replied sooner but was away last week and catching up this week.

"Perhaps, the moderator would consider setting up a similar section - a Zero Pred section, perhaps available by clicking on a link under the pinned threads."

I haven't read all of this in detail and anyone is welcome to post anywhere within the discussions no matter the stage they are at. If it is felt useful, by all means someone (Linda?) could start a new discussion with a relevant title and I can add a link to it in the pinned discussion. Just let me know when you have created the discussion by reply here or Private Message and I'll add the link. This is true of any discussion, ie if there is a discussion users think it would be particularly useful to highlight/link to from the pinned discussion I can easily add these. I am always open to suggestions from yourselves for the pinned discussion, ie if it would be better splitting it up a bit or any other ideas feel free to message me, it is there for you. 

Regards,

Alan

Thank you, Alan.

What does everyone think of the suggestion to have a link under the pinned threads on the home page for those who reach/have reached zero Pred and remission?

MrsO, it would give me (and I am sure others)  hope that there is light at the end of the tunnel and although no cure, you can be free of pred and maybe for some people, remission.  It would boost morale when some of us feel low at times.  It's a brilliant idea and I hope it is taken on board and considered.  A very positive step.  Pat

Hi Mrs. O and Pat!  I fall into this category where I am now off prednisone but not totally in remission.  I think that I rushed to get off prednisone too quickly against my rhumy's advice.  I just wish that I had found this site before then, because I would not have done that (knowing what I know now).

I still have soreness in various parts of my body at different times but nothing I cannot handle.  I am lethargic but if and when I get tired, I take it easy for a day or two.  I am very fortunate that I can do that because I am retired.  

I now realize that I must always be mindful of my limitations and accept the fact that my PMR is still lirking in the background.  However, I am learning to live with it and be grateful for my health such as it is.   

When I read about the experiences of others, I too feel very fortunate.  It is a reminder of what it was like when my PMR was full blown.  I believe that by having a link under the pinned threads on the home page, we would create a win-win situation.  

Why not?  Haven't reached there myself yet, but I will😀

Hi all,

No-one contacted me about this so I have created a discussion here

https://patient.info/forums/discuss/zero-predisone-discussion-450915

which I have added a link to in the pinned discussion. I can easily edit the discussion with more/different info if required.

As I said above, if anyone has any other suggestions let me know any time.

Regards,

Alan

Sorry for not getting back to you Alan - at first I was giving a chance for perhaps a few others to give an opinion...and then got overtaken by other things (not least the arrival of first grandchild!)

But thank you for being on the ball as ever, Alan, and creating a link for this discusion - you do support this site so well and I'm sure I speak for others when I say how grateful we are.

MrsO

Congrats on arrival of first grandchild.  Boy or girl?  You'll love being a grandma.

C.  💐💐💐

Oh thank you so much Constance - love the little bunches of flowers!  It's a little boy - well actually rather a big boy weighing in at 9lbs 3oz.  I'm loving it already even if my pockets are a bit lighter!

Wow!  9lbs 3oz!  Poor Mum (not that she will think so now it is all over)!   My daughter was 8lbs 6oz and I thought that was huge (especially as I weighed only 8st 7lbs at the time).

Enjoy every minute with him.

C. 

Constance, Snap! with being 8st 7lbs and producing a large baby - our son was 8lbs 10oz!  I guess the baby is taking after him as Mum is a tiny 5ft 1in!  Needless to say, a caesarian section.....with forceps!  Happily, she and baby are fine.

Wish I was 8st 7lbs now!!!

Hee hee!  Not so sure about the 8st 7lbs now though!  Think of all the wrinkles we would have!!!!

Am 5 ft 3 inches: Mine were 8 lb 14, 8 lb 11 and 8 lb 8: all C sections.

Having had my cataracts fixed, and can now 'really' see, I can now attest to the fact that I have wrinkles, regardless of my current weight!

Just for a change - mine were 1300g and 1090g (2lb 13oz and 2lbs 4oz respectively). Both c-sections...

If I were 8st 7lbs I'd disappear under the wrinkles...

Wrinkles are just laughter lines!!!

Wow!  Were they full time pregnancies?  I think I'd rather have the discomfort of 8lbs + 

Nat, the first one at 1300g was over 8 weeks prem because I had toxaemia, BP was 200/160 the day she was born. Esca, at 1090g, was only 5+ weeks early but hadn't grown after about 29 weeks. They both spent 6 weeks in SCBU - and Nat now works in the NNU (neonatal unit)

Of course they were not full time pregnancies.  That was another one of my stupid questions!

When Nat looks at the babies it must be a personal moment each time.

They could have been - Esca didn't grow after 29 weeks, in the old days without scans they wouldn't have known and wouldn't have hauled her out early! The placenta was decidedly dodgy so she wasn't getting fed properly.