gvhd and chronic fatigue syndrome how long does it last?

Mandimoo0

hi everyone,
I am 50 years old female and i am new here but not new to leukaemia, which I have had twice. this time though I had a bone marrow transplant in july 2014. i have had gvhd from the start and I am still suffering with it in the skin, achy muscles etc; still on all the steroids and ciclosporin and all the other meds; steroids have made my bp rise and i now have to take a drug for that as well. both the fatigue and the gvhd knock me for 6 and i am struggling to get my life back to normal. my boss has been amazing and lets me work from home; however he isn't going to be able to do that forever and i am wondering if anyone else has long standing symptoms like me and did you go for medical retirement? i am worried that it will be permanent and i may loose my job eventually.
any advice from those with long term gvhd would be really helpful

Hayley_Anthony Nolan

My name is Hayley and I am the nurse specialist on the patient experience team, my role here is to offer additional advice and support to patients and families who have been affected by blood cancer and stem cell transplant. I will be working 3 days a week in the AN office.

I am sorry to hear that you have been experiencing chronic GVHD, as you already know it can be a debilitating side effect of a stem cell transplant that can affect quality of life. You are just approaching two years from your transplant and I am sure that by now you would be hoping to be off your medications and getting your life back to normal. Unfortunately chronic GVHD can persist for some years after transplant and I am sure your transplant team are trying to slowly wean you off your steroids and ciclosporin without causing a flare up of your GVH symptoms, however it can be a bit of a balancing act and can take a long time to achieve. Has your consultant ever mentioned a treatment called Extracorporeal Photopheresis (ECP) this is an ultraviolet therapy that is used in cGVH and works well with the treatment of skin GVH. It does depend where you live and if it is available to you but maybe discuss this further with your consultant as it does sound like you are a bit stuck in terms of improving your cGVH. Although it will definitely improve with time and should eventually burn itself out some patients never quite get off their medications and have to live with some form of cGVH.

With regard to your fatigue to still be experiencing this is normal, your immune system is still suppressed and you are still on lots of medications. The steroids will make your muscles feel achy and so I am sure this is affecting your level of fitness. Try to ensure you manage some form of exercise every day, it doesn't have to be much or too heavy but regular activity has been proven to improve fatigue after transplantation. Again like cGVH your fatigue will get better but it just takes time.

The fact that you are managing to work is great and proves that you are moving forward and it sounds like you have an understanding employer. My advice would be to just keep them well informed and maybe speak to the HR department about your options but if you want to continue to work then you should try, its all part of getting your life back to normal. Your transplant centre should be able to provide information on your recovery for your employers and they should also have a welfare officer that could provide support in terms of benefits etc. Macmillan provide lots of useful information regarding going back to work after treatment you can find this at: http://www.macmillan.org.uk/about-us/what-we-do/how-we-work/work-and-cancer or speak to citizens advice.

Recovery can be long and tough but you probably don't realise how far you have come and how much you have improved. Keep going, everything you have said is normal and it will get better.
I am sure you will get some helpful advice from the patients on this forum who have experienced the same as you and can give you some helpful tips and words of support.

If you have any questions please do not hesitate to contact me.

Best wishes
Hayley

Dieseldrinker62

Hi Mandimoo, and welcome.

I'm a similar age to you and had my transplant for ALL in January 2013, and like you I suffered from skin GvHD from about 4 months post transplant. I also went onto steroids (Prednisolone) and was on a high dose initially which seemed to get things under control and certainly reduced the effects, but it didn't overcome the problem fully.

After about 5 months on the steroids I was referred to another hospital for the Extracorporeal Photophoresis (ECP) that Hayley mentioned. This treatment was a heavy commitment, both in terms of my time and financially for the hospital as it is an expensive treatment (about £1000 per cycle). Each cycle consisted of two sessions of treatment over consecutive days, and was initially every 2 weeks, but reduced slowly to monthly, then 6 weekly, 8 weekly and eventually 3 months, with the final cycle 6 months after the previous. It did get rid of the GvHD though and I can now say that I don't suffer at all any more. In the end I had 24 cycles of treatment over the course of about 2 years, so like I say it is a relatively big commitment in time.

There are a limited number of centres that offer the treatment though (only 6 in the UK I believe), so it's availability may be dependent on your location and the willingness of your transplant team to put you forward for treatment. It doesn't suit everybody and doesn't always work, so bear in mind that it may not be the solution for you. It's worth asking the question of your consultant though if your current treatments aren't getting on top of the GvHD.

I didn't encounter chronic fatigue as a result of being on the steroids though and in fact it was them that gave my recovery a bit of a kick start since, up until starting on them, my appetite had been poor so I had very low energy levels. The steroids seemed to help me get eating again, which consequently gave me some energy back.

I also had an understanding employer which was a great help, since my prolonged treatment meant I was on Ciclosporin until the GvHD was under control and meant I couldn't return to normal duties (working on construction sites) until fairly recently. I was fortunate enough to be able to work from home for a long time, but was able to return to normal work in February 2015 before the ECP treatment had finished in October 2015.

I was really lucky as my length of service meant that I was covered on full pay for up to 12 months absence. I returned to 'light duties' within 9 months and did that for another 20 months! I guess your employers flexibility depends on how able you are to work effectively at home, but perhaps if you're able to get the GvHD under control a little more you may have more flexibility to work in your normal workplace with some precautions to protect you if your are immuno suppressed? It's probably a case of keeping talking to your boss, demonstrate that you are still doing your work effectively and keep them on side. Keep the dialogue going so that they can give you an indication of whether your working arrangement is becoming an issue for them so that you can reach and agreement that might allow you to stay with them.

Hopefully, given the right treatment, your GvHD will become history and you can get back to a normal life. In the meantime if you have any questions please post them on here and we'll try to answer them as I know there are others who've had issues with GvHD too.

All the best,

Steve

Mandimoo0

Thank you Hayley and Steve, I hadn't heard of ecp..I'm under Hammersmith Hospitals transplant team so will ask about that.
We are reducing the steroids every 2 month by 1mg as my body flares up at the smallest change. So its a long process.
My employer is a gp I work in the NHS. .so my work place (gp surgery) is a risky environment for me so that's why he let's me work from home. He's very supportive and has been really good about wages etc.
I'm so relieved to hear it will eventually end! All the people I met at the centre are off their meds except me!!! I was starting to think I would have it and symotors forever.
Thanks for your support and advice
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