Hi Helen,
I did see a new consultant who did believe it possible I might have Myositis. She requested I had blood taken for tests there and then for ck, Myositis screening, iron and calcium. She also examined my legs, condition, strength and range of movement. So I am happy that someone is taking my issues seriously , but not happy I am still not improving.
kettle sounds good.
Hi Dave
Maybe I could bring the cuppa over to you if that’d be easier. I’m relieved to hear she took you seriously and is doing something about it. That’s good to hear.
Love
Helen
Hi Helen,
Thankyou for being there. It will be good to know one way or the other if I have Myositis or should I say muscle inflamation which may or may not be causing my mobility issues as it needs looking into as this is my main gvhd issue as well as the constant fatigue which never seems to improve it just feels like it gets worse. How are you? It would be good if you were making progress as one of us needs to.
Really need that cuppa but may need something a bit stronger in it .
Hi Dave,
I’m just waiting to get into the ecp department.
Since I got myself to eat more, … remember the pot noodles:), the fatigue seems to have very very very slowly got better.
I had an app ‘untire’ that helped too, although we neither of us have cancer, cancer free, but it’s for cancer related fatigue. But I think what really helped was allowing myself to sleep long in the day without feeling bad. It took a long time but felt much better.
I’ll get off here before they come and get me.
I’ll see what I can do about the coffee, I’m sure I can find something.
Love
Helen
Hi Dave,
Got back today from the clinic. They weren’t satisfied with the situation and have added an immunsuppressant. I’ll let you know what it’s called. It’s for transplant patients against rejection. Makes sense.
Hope you’re holding on ok. I’m with you.
Love
Helen
Hi Helen,
It is good they will add a new immunosuppressant for you. Most of the immunosuppressants are used to stop organ rejection. Jakavi, rezurock, tacralomis, cellcept. Just hope it does not come with bad side effects for you. On another immunosuppressant you have to be very careful about picking up germs from others as you will be more at risk. I hope it works for you. I guess unless you try you will never know.
I am still on my Rituximab and has been 6 weeks now and I am getting quite disheartened due to no improvements as of yet. However in Myositis forum some people have not started seeing results for 3 weeks. I haven’t even had slightest change, I am so fatigued but am eating although at moment I still have no appetite. I am wondering if it will ever end or improve. Hopefully it will be good you going on another immunosuppressive and it will start help you heal.
Hi Dave,
The new med is called Sandimmun. I’ll check the active ingredient.
You’re doing all you can. Be kind to yourself. Positivity is really important. Do you have a therapist or someone at the clinic you can talk to?
Helen
Hi Helen,
This med sandimmun in uk we call cyclosporine and generally it is given to most during the initial transplant to dampen down immune systems as they grow and the donor takes over.
Let’s hope after 2 years it can still make an impact. Worth a try.
Hi Helen,
you never know. Strange things seem to affect gvhd. My fingers are crossed for you. No grapefruit while you are on cyclosporine. Coffee is ok though.
Thanks Dave. Relieved to get the ok on the coffee.
Do they give you restrictions before your ecp on what can can’t eat?
I don’t have any but saw in facebook group quite often no fatty foods and drink lots before.
Love
Helen
Forgot to tell you Dave, I called novartis yesterday to find out if they have a patient support scheme for jakavi like johnson and Johnson have for some meds.. It was worth a try, but , no, nothing.
Thinking of you
Helen
Hi Dave, Helen and everyone following this discussion.
I hope you are well.
I’d like to draw your attention to my new Forum post entitled ‘New GvHD treatment approved for use in Scotland’ in case it is of interest.
It’s in the ‘Long term recovery’ category.
All the best,
Tom
Hi Tom,
That is superb news that Scotland has one more tool in its Arsenal. Just wish it was a UK decision as it could really benefit me I think for my skin condition. Helen currently lives in Germany where it may have already been approved.
Hi Dave,
Yes it’s a step forward isn’t it. Any wait for further treatment options is too long, but do keep checking in with your consultant re: approval in England & Wales, as it sounds as if NICE may make a decision by September.
All the best,
Tom
Hi Tom, yes as Dave said I’m in Germany and on 2x 10mg jakavi daily.
Dave like me is suffering particularly with skin gvhd. The doctors here say a combi of jakavi and ecp is the best thing they can offer people like us.
Thanks for the info. Keeping fingers crossed for uk decision in the autumn.
Best wishes,
Helen
Hi Dave,
Hope you’re holding on.
I am , just about. Bad week. The cream from the dermatologist has caused serious skin deterioration on my feet. Trust out the window on that one.
I’m glad you’re there.
Love
Helen
Hi Helen,
so hard all the time. Bad week as well for me as well . Sorry the cream did not work. It sounds to me a bit like your wounds should be treated a bit like open pressure sores. And barrirer cream used to stop infection. I understand the wounds optimally need to dry up to heal but until that time treated like pressure sore wounds. Luckily I don’t have these wounds on skin though. Sometimes my calves go very tight but I think it is edema related to gvhd. My skin is tight above and below my knees which is main issue and here I believe I have fascia scleroderma which goes through my muscles to the bone so when I stand the skin is so tight I cannot bend my legs so when I try to walk I feel like I am going to fall over. With the Ecp it has not eased at all as far as I can feel and I have done over a year no w. My fatigue has grown massively and just standing up is a job to raise from the chair and I end up panting just after doing this. Then can only walk to kitchen next room and stand for max 5 mins then have to sit again. I was hoping Rituximab may help a little but it it now over 7 weeks since I had first infusion and not made any difference I can feel. In comparison to me I believe you are doing a lot better. Keep going hopefully things improve soon.
Thanks Dave, it really helps. You understand.
Your leg skin problem sounds really horrible. Almost a bit scary.
I’m taking opiate based painkiller drops at the moment for the lower leg ankle pain. I only use it when paracetamol isn’t enough. Talked it through with my therapist cos I’m cautious about addiction. Hopefully in a few days I can put it away again.
We’ve really got it bad. Was wondering if it would be possible to swap phone numbers through Anthony Nolan. We could use wifi. Wonder what you think about it? Maybe we’d just bring each other down. Might be worth a try though.
Helen
Hi Helen,
How are you? Well I hope. I hope your skin weeping has dropped a little. I am struggling at the moment as my skin is so tight still and never lets up. One on my calves is now heavily peeling skin so don’t know if that is good or bad. Luckily is not weeping though, how it is a bit red underneath where the skin has peeled off. I feel keeping mobile keeps becoming more difficult but force myself on my feet every now and again so my muscles don’t pack up. I hope you have been better