Flare up continued

[Bfp1]

You are all amazing. Back on 40 pred orally. Second cyclo chemo done. Feel rough and in pain. Puffed up and losing hair. Am having

Lots of tests full mri to find out why I am so weak. I can mobilise now and walk to bathroom in room and back with frame. Will. Be in hospital for a

Few

More days. And then talk of rehab. I fell

Down a hole I didn’t see coming although I should have. Arms hurt. Eeg ok. Found arthritis in jaw which I knew and in all leg compartments and everywhere else. Pretty fed up but it is what it is. Chemo

Affects my head and stomach and zaps

Me good to have you there x

[Hidden]

Hi bfp1, it sounds like it's still a bit swings and roundabouts but good to hear you at least managed some assisted walking.

I am sure the treatments you are on will be knocking the stuffing out if you but hang in there and keep us updated.xx💜

[SheffieldJane]

Fell down a hole! That takes the biscuit. I bet you do feel rough. Poor you! No wonder you are feeling low. Thinking of you.🌸🌸🌸🌸

Keep us posted. X

[SnazzyD]

Poor you. It gets every bit of you doesn’t it? Chemo can make one sooo weak. At 41 it found it difficult to do anything at all for 2 of the 3 weeks per cycle. Goodness knows what having that with 40mg as well would be like as that felt much same. My hat goes off and my heart goes out to you.

[Bfp1 in reply to SnazzyD]

I just got on with it last time and felt terrible and assumed it was normal. I have too high a tolerance threshold. I feel very weak and like my whole body hurts. But I make no fuss and put up. Now I am going to ask for painkiller. It’s worse. Thank you all so much xx

[PMRpro Ambassador in reply to Bfp1]

When my husband was on chemo 25 years ago he tried to be stoical and refused to take any more tablets than he had already got. He wouldn't believe me that taking the tablets BEFORE the unpleasantness started was better than trying to deal with it afterwards. He did believe the oncologist though - and couldn't believe how much better it went.

[SnazzyD]

It is normal, though I found it was downplayed. I found my whole body hurt too inside and out. I also found that it develops over the cycle time with new things coming and going and some cycles were worse than others for no apparent reason. Treat yourself to a painkiller I’d say.

[Marilyn1959]

Makes my issues seem very minor in comparison to what you are going through. My sincere best wishes to you and hope that improvements continue onwards and upwards. X

[Bfp1 in reply to Marilyn1959]

Thanks. My bloods are better and GCA seems to be controlling. Chemo is horrible. Lots of uncertainty about next steps. Thank you xx

[Hidden]

Hi Bfp1

I missed the start of your issues, so just diving in now, l will back read later.

Are you having Chemo for your PMR or other issues & what are you on?

I can list you some Surviving Chemo Tips later if it would help 🌷🌷🌷

Kind Regards

MrsN

[Bfp1 in reply to Hidden]

Hi. I am on cyclophosphamide monthly. Dreadful tiredness and stomach cramps. Sores in nose. The usual constipation or the opposite. Very unpleasant when you can’t be mobile independently. Nothing feels right. And 4 more to go. Lots of thanks x

[Hidden in reply to Bfp1]

I had Cyclophosphamide in my FEC/T for Breast Cancer, it’s just great it can cause constipation or the opposite, what’s that all about?

Is your mouth very sore, are you getting treatment for that & does it affect your eating?

I have an idea how you must be feeling & that’s pretty rotten especially with this hot weather!

I hope they can make you as comfortable as possible with mouthwashes etc.

Keep your skin well moisturised if you are able to manage it.

Think of you 🌷🌷🌷

[Freshmimt]

Thinking of you and hope you are being well cared for now x

[Blearyeyed]

We are glad to be here for you and so happy to hear you are improving slowly.

Thanks for taking the time to let us know how you are despite being on your hospital bed.

Hope those Doctors and Nurses look after you well , if not , let us know , we will come at let them know what's , what with arms filled up with hugs and flowers for you. xxx

[Bfp1]

Gosh you are amazing. I am in the royal free hospital Hampstead. It’s a real issue. GCA has responded to huge amount of steroid 40 pred now daily. When I got here they went from 30

To 40 pred orally. Then they went to 250

For 3 lots IV and then 500 IV 3

Lots. Then I went down hill physically but bloods improved. Then they discharged me

And I collapsed legs at home and readmitted. Now I have had second round of cyclophosphamide chemo and am zapped

From that. But I can’t get off the toilet. I can mobilise and walk a little bit with the frame but my arms and legs tire fast and my

Left knee is

Not stable. Very low and anxious. I don’t qualify for rehab I think and yet I am in real

Pain and weak. On oramorph and paracetamol and still in pain. Sorry to moan. My brother is seeing my consultant tonight as he knows of the TCZ drug and has found out I could be eligible. It’s a biologic. But we don’t think this trust can afford it. Just asked for

My canula to

Be taken out. A mess. My knees are really painful as are

My arms. Maybe this pain is forever and my shoulders. It was good to talk and I wish I could feel better. I have no

Idea what is chemo what is steroids and ways is GCA or

PMR. People have a great deal worse. I should count blessings not misfortunes. ThNks for

Being there. With love to the supporters. I sometimes read the posts and everyone is talking about tapering preds at tiny amounts and lower than me. I work in larger amounts and higher doses. Is anyone else in this situation ? On 40

Now. No idea what’s next. And I look like a puffed up hamster losing my

Hair. Not a great image but I can deal with that xxxx

[GOOD_GRIEF]

Hi Bfp:

Hoping you're going to turn a corner soon.

In the meantime, I hope you're telling your medical team about all the symptoms. I hope you're not being "brave" and "demure", because they can't help you if they don't know. Maybe there's something that can be done to help you. Maybe it's something you just have to get through. But do make sure you tell them.

I'll be thinking about you. Let us know how you're doing when you're up to it.

[5lupins]

We are all here even though we don't always respond. Hope you get better soon and take care. J

[VAl4266]

I DONT. Know what to say, I'm so sorry you are suffering so much, it puts a lot of our problems to nothing, I expect all the other drugs you have to take, are reacting with the steroids, do hope you will soon improve, and feel. Better soon, will be thinking of you.x

[Trevgrrl]

I am one of those who can't seem to reduce my prednisone below25 to 30 and feel desperate when I read others are on 5 or 6. I don't understand why. I once again tried to get down to 25 this past week, but yesterday I had such pain up and down my sides and shoulders that I gave in and took 30. I feel better today. But I feel like I'm doing my body bad.

[Bfp1 in reply to Trevgrrl]

I so know what you mean. I hate being on them. My eyes so puffy it gets hard to look out. I got down to 10 and now up to 40. When on low dosages I was in constant pain and thought I would try and put up with it. Inflammatory markers jumped up and panic ensued about the risks. So now I take the steroids but I was

Given IV to 500. Blew my strength away completely. Who guides you re the steroids. It feels sometimes when I read the posts as if people have tablets of tiny amounts and seem to decide themselves. My rheumy tells me and discusses. Let me know people - is it patient led?

[Jackoh]

You obviously have so much to contend with at the moment I think it certainly puts me to shame when I moan about small inconveniences compared to your situation at the mo. Do keep in touch when you can. All routing for you here. I think as far as tablets are concerned everyone and everyone’s experiences are so different. Please don’t compare yourself to anyone else.

[Trevgrrl]

It is hard not to compare when I want so much to reduce. But every time it gets me. I also think maybe I can put up with the pain, but then one day I'm walking down the hall in my house, a very short hallway, and I'm breaking into tears! So I take the prednisone and feel better. It is madness!