Flare up update

[Bfp1]

Hi all. I have been in hospital for 2 weeks. They are arranging a care package for me to go home. Pmr and GCA mega flare ups. I have lost the ability to do stairs. And getting out of chairs and getting up from a fall. Can only walk with a frame. Chemo is making my hair fall out and steroids ensuring the rest of me is fat and round. I live in a flat which is good but on first floor with no lift. So need hospital transport to get me up and down stairs. Very much in pain. Now have asthma. And worried about lack of mobility and chemo. In hospital in went to 500 pred IV. Crp now ok. But I am not. Now on 40 pred daily orally. Cyclo round two Monday. Terrified of getting worse. I want to know people do get their mobility back and can get up again. I know I need a new knee but I want to walk up and downstairs and get off chairs. I feel very anxious. Will get physio OT and carers I think. Frame round the toilet. Special chair (very expensive and a leg lifter. It would be great to speak to someone when I home. I really need support xxxx

[Hidden]

Hi bfp1, I am so sorry you are having such a bad time. It must be very upsetting to feel so weak. Hopefully a few days at home may just help you start to build up a bit more strength and a good care package will hopefully provide the support you need. I know a member was stuck on the first floor of her house for a few weeks a short time ago but then got strong enough to get outside again. My very best wishes. 🌻

healthunlocked.com/pmrgcauk...

[Bfp1 in reply to Hidden]

This is really encouraging. I need more success stories. Still feel pmr and GCA all

Over.

[Hidden in reply to Bfp1]

Over the past 10years with fibromyalgia and with PMR over the past 3yrs I have had periods of weeks when I could barely make it out of bed then I would slowly come round as flares calmed. You must grab every bit of help, take things steady but try and use the tools they give you to move as much as possible. I am lucky that when I had a new downstairs loo put in the builder suggested a higher toilet which helped so use all the equipment, it helps. Good luck and if the PMR/GCA don't settle once home for a couple of days then ask Dr to visit you and perhaps a short blast of higher dose. If you can get some symptoms more controlled it will raise your morale. X🌻

[SheffieldJane]

I hope that you go from strength to strength now that you are going/ back home. Ensure that you are receiving all the benefits and advice that you are entitled to. On- line shopping for food and essentials will help. Keep letting us know about the challenges you face. You belong to this resourceful group. Sending a hug 🌸🌹💕

[jinasc]

Sorry to hear things at present are not so good, however the upside is that you are home and that is an improvement.

I trust they have also provided you with a perching chair, extremely useful at the kitchen sink. As well as a frame around the toilet, get a new raised seat. If your shower is big enough, put a plastic garden chair in and sit.

Now about your 'knee' I am assuming it is osteoarthritis.

If so try this Flexiseq, (not available on prescription unfortunately) it works like WD40. It is a biological gel therefore you do not ingest it and it has no side effects

You can read about it here: versusarthritis.org/about-a...

Without the use of this, I would really be struggling, one knee is bone on bone but a replacement for me, is out of the question. ARC research developed this and if you decide to try it, use your search engine as on line it can be cheaper than a normal chemist. Just buy one tube and give it a whirl.

Keep in touch and try and move somehow every hour except when you are asleep. Use a reminder clock as the longer you sit the stiffer and more painful it gets.

I also have 'slither sheets' they enable you to move easier in bed and I thank the person who told me about them.

Stay strong and keep on posting you are not alone you have all the people who post.

[Bfp1 in reply to jinasc]

Sounds good. Where do I purchase it. I couldn’t see a link. Many many thanks m

[jinasc in reply to Bfp1]

Sent you a PM. I do not like to advertise anyone.

[prospecter7 in reply to Bfp1]

Could you send a PM to me, please. I can’t find anything on line called that. Thanks.

[PMRpro Ambassador in reply to prospecter7]

easymovesheets.com/

This is the sort of thing you are looking for.

[HeronNS in reply to prospecter7]

There is a link in jinasc's reply. When you click on it HU tells you you are leaving the HU site and then you just click on the URL there and it will take you to the Flexiseq site.

[prospecter7]

Thanks!

[Hidden]

Hi bfp1, just checking that you are doing ok and just wanted to say goodnight!🌻😁

[Bfp1 in reply to Hidden]

It’s not great. Was discharged without support. Fell 3 times at home. Legs collapsed. Chemo ? And now I am lying in a and e being readmitted. Fortunately I spoke to my consultant who said come back. Had to call an ambulance and now legs are worse. I can’t stand or hardly move them. It’s really late and I am fed

Up to the back teeth and worried. I thank you for your care and concern. It is helping. xx

[Hidden in reply to Bfp1]

That is so awful for you. Keep us updated please. 💜

[Quinacridone]

Thinking of you, at least using this forum you know you are not alone, always someone to answer your questions and hopefully make you feel positive and determined, and to know others do care about you. xxx