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Thanks Dave .
The reminder for patience and trust.. belief it might get better is helpful and calming.
I'll keep you posted.
Hi Dave, I'm getting the feeling I'm recovering a bit after my flare up. Didn't take painkillers yesterday, a first, and could hold a conversation without them, quite special. I'm cautious, don't want to celebrate too soon.
Let me know if those new meds are working in any way. And I'd be interested to understand what's causing your immobility. Is it fibrous muscles and hard leather layers of skin which stop your ability to bend? Are you in pain when you try to walk, bend, stand?
When you talk about layers of thick skin I can fully relate.
I am happy that you seem to be recovering after your flare I hope recovery for you continues to happen and you improve. I have to admit I am lucky that I have not seemed to have any flares since about last August when had a liver flare. However in last year and a half I have seen no improvement in my mobility my legs continue to feel like concrete, heavy and swollen and very inflexible once stood on them. What gets me is that they are more bendiblr lying down but restricted abut I believe dime to the tight skin. If I go from sit to stand and straighten my leg at the knee it is like I am having to stretch / tear my muscles for the first time. When I am standing and try to bend my knees I can only bend a little which is less than half the distance when lying down, and when I go upstairs 2 or 3 times a day I really have to pull myself going up with both hands and coming down I have to support my weight with both hands. I have not improved from this in last 18 months. I can only stand up for max five minutes and feel to tight, stiff and heavy and feel so fatigued I have to sit down again. I often used to walk 15 miles a day so this is a complete nightmare for me. My skin on my legs is not scaled or lichenous nor pigmented, the skin just feels tight. I am not really in any pain unless I have become accustomed to it. I believe I probably have muscular inflammation which is why I believe I am suffering so much it is not just a skin issue. This is one of the reasons I am taking Rituximab as it is known to be quite successful for muskoscelta issues although it has not worked in every case. To date I have had 2 infusions 2 week apart and I am 3 weeks out from the first. To date I have seen no difference or improvement so it worries me it may not work for me. I feel occasional tingling in my legs and think I may be improving slightly then days later I realise nothing has changed. False hope I think. There are medical papers that state you may start to see some improvement after 4 weeks but I guess as I am so impatient as I have been in such bad mobility now for so long I am getting desperate. So I guess for now it is still watch this space.
you sound in your tone more positive I guess this is because you have some improvement, I guess I would feel the same.. so all in all with my legs I believe I have fibrous / skin tightness above and below the knee but also muscle inflammation as I can’t believe tight skin only would cause me such tightness/ inflexibility. I do also have what feels like hard lumpy skin under my stomach and tightness around waist which I believe is just skin issue but not as worried about this I just would like to get a bit more nobility back so I can walk around my lounge to get some muscle mass back and not having to spend my life sitting down or in bed. Now we are in or approaching our third year after transplant let’s hope the gvhd symptoms get less as it is usually the third year symptoms generally start to reduce. So fingers crossed.
Hi Dave. That sounds horrible. It's bad that you can't be standing up for long. My physio said our skin is like burnt skin and needs to be bent, although causing ripping and pain, to get some elasticity back in it. But I'll admit I'm sceptical, because burn sufferers have intact immune systems and their skin can build scars and heal whereas ours can't. But I have a feeling that sometimes I walk better after a few minutes. It's such a shame that you're not strong enough yet to stand a bit longer. How's the appetite going? That might help it when that picks up. Have you tried painkillers just to see if it enables you to be more mobile. All of our perception of pain is very very different. Mine is really wierd. For example, Paracetamol helped me when I had low blood pressure after the birth of my boy.
I see what you mean now about the muscle problem. That's how you got that new medication. Mine is more skin and the muscles are wasting and getting fibrous because of lack of movement and flexibility Ithink. My ankles are also sort of fixed with odaemia which get worse after I stand up in the morning. It pulls the skin tighter.
I have a super GP and she said I don't need gym exercises, just practicing going up stairs and getting up and sitting down in the chair. I have to pull myself up too.
I had a really good nurse in the clinic when I was on my 8 month stay. When I was in tears in pain and exhaustion trying to go to the loo, he praised me and said, almost like a cheerleader, " you're doing great, this is it, this is exactly what will make you stronger". I still have his voice in my head, when I'm pulling myself up the stairs... he's encouraging me.
Oh Dave, I'll get off here. It's really good to be in touch. Our 3rd year! Begs belief. We're holding on well. We're still here! We must be doing something right:)
At last I've got the ointment that the dermatologist prescribed for the "hard sclerodermiform sheets of skin "
Instructions.. translated, "only for use on targetted, localised, not open, skin. Not big skin surface. "
It's called ...
Dimethylium sulfoxidatum diclofenac Natrium carbomer 50,000. Unguentum basale dac.
The chemists made it themselves, it's a mixture to be made up by your pharmacist, not off the shelf. Be very cautious with it at first cos I think it might be very painful if I catch it on ripped skin.
who knows, It might help. I'm hoping. I just put it on now. Will let you know.
I do really hope it starts to work for you and it helps you make progress. You also needed something to lift your spirits up. Let me know how it goes. I am having a bad day again as I still seem to be making no progress and the skin around my knees seems extra tight today around my knees making it nearly impossible to walk. I hope I get some progress with the Rituximab but nothing happened yet. Good luck
Just a quicky, I'm having a bad phase too.
Good to know you understand. I'm sending you kindness.
I do hope you are feeling better. It is so hard. Just had my 2 days of Ecp and yesterday did not feel too bad after, today I am not so good and my mood has dropped again. Can barely walk to my kitchen but have to force myself however uncomfortable it may be as I need to eat something as eaten next to nothing today. No improvement in skin / muscles yet and now into 6th week after my first Rituximab infusion so starting to think it may not have Any impact on me so this is also getting me down as well. Have consultant visit tomorrow but not sure what outcome I want . I just wish I was making some little improvement to reduce my stiffness / tight muscles. I hope your new cream is starting to help.
Need to put that coffee off as currently not up to it.
I wonder what your consultant said apart from be patient.
I'm with you very often.
Sending kind energy and getting the kettle on.
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.
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.
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 .
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.
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.
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.
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?
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.
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.
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
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,
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.
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.
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.
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.
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.
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
You're right to just keep moving. I think that's the most important thing for us. When that goes because of muscle waste then it'll be a very tall order to keep me going. The skin on my feet feels like it's detaching itself from my feet inside, it's buckling. Thankfully my feet are getting strangely numb on their own, but I still use the opiate at night. Avoid it in the day. There's still lots of pain though. It's strange, I can't describe it.
A doctor friend suggested that a dermatology appointment won't really help because it's not about the skin, it's a systemic problem, immune system. I've got a dermatology appointment for end of October and will go anyway just to hear what they have to say. It certainly feels like I'm losing at the moment. It's the ecp that makes me feel human.
On a brighter note, I had an appointment last night to demonstrate a teaching method to another teacher for illiterate young migrant adults. It went really well, all of course only voluntary work, but still, so refreshing to be in the real world. I felt really happy and it was well received. It's only 1:1 in sitting, my blood pressure is in the cellar at the moment, I can't stand very well.
I wonder if you mind me asking you what did you do before you got ill? I was a teacher for years and then just before I got ill I did voluntary basis illiteracy work alongside receptionist on a campsite. I did lots of different jobs before teaching, restaurants, factory etc.
Teaching a class is no longer possible for me and won'tever be. I'm disabled and hopefully will get a pass soon which will let me take a person with me places for free. Don't know what it's called in England. When I've got that then I can get a disabled car park badge.
I find it helpful taking on the new identity of disabled. It made it easier for me to apply to do that voluntary teaching hour. I told the organiser in my application mail "I'm disabled". First time in writing. It worked. They've invited me back in September to make a you tube video, demo of the method. I'll keep you posted.
I have to laugh, it's with the full allowance of painkillers and I have to lie down the whole day just to teach 1:1 for 30 minutes in the evening. But I did it!
Night night Dave, I hope I haven't said too much. I just feel like I'm in a good space at the moment. Not my body though.
Shall I put the kettle on?
Love to you,