Hi Mandy,
I think reduction of Ciclosporine is a fine balancing act but they do try to wean you off it as soon as they can. I can’t remember now how quickly mine reduced but I seem to recall that it reduced fairly quickly to start with but then slowed down, particularly as my GvHD developed, which delayed me coming off Ciclosporine for a long time afterwards.
I wouldn’t worry too much about the Ciclosporine as that is there as a protection, probably with a multitude of other drugs your brother is taking whilst his systems get back up to speed. The main things that are a sign of his recovery will be his counts for white and red blood cells, which indicates the new bone marrow is starting to do its job.
I can’t remember exactly when but my medical team told me that my chimerism had got to 100% donor which is the ultimate goal, meaning that my marrow was completely new. As a side issue my blood group also changed as that from my donor was different to my original blood group. Again, once that happened it was a sign that my graft had taken over operation of my systems.
Regards,
Steve
Thank you Greg and Steve
It is really beneficial to hear your experiences. We are aware all are individual and the course along the road to recovery can change in various ways many times.
However we appreciate you valuable input and I will be relaying to brother your points and how it is important to ask his team on reasons and explanations for his personal blood readings etc..
Many Thanks
Mandy
Hi Mandy
I am glad that your brother is doing well. The advice that has been given here is brilliant and I just would like to add that sometimes the immunosuppression is reduced quickly to induce graft versus host disease. Remember this is a good thing but like Greg has said it needs to be balanced and treated appropriately. The reason GvHD is a good thing is because it then causes graft versus leukaemia which means that is should help prevent any relapse. If your brother does get any GvHD and it causes him problems they might slow down the weaning and take things a bit more slowly. So he needs to monitor for any skin changes, rashes, itchiness and any diarrhoea. Report anything to his team and they will decide what to do.
In terms of his skin, he will be more sensitive when he is on cyclosporine but also generally. His skin will be very dry irrespective of GvH and he will be more sensitive to temperature changes for a while. This summer he needs to be very careful in the sun and in the long term he can be more relaxed but should always wear a factor 50 and protect himself with a hat etc.
Keep us updated with his progress
Hayley
Hi Hayley
Thanks so much for your advice too it’s really helpful and although my brother is very knowledged about all aspects of his condition and treatment it does indeed benefit him to be able to contact real people and professionals so thanks for taking the time to write as we know how busy you must be, really appreciate it.
While I’m writing he has asked me to enquire about fitness levels if anyone is able to help?
Basically my brother is a professional golfer and has always kept extremely fit and flexible generally but obviously after treatment etc he is now restricted to just going for walks and very basic stretches, in fact only yesterday when out on one of his walks did think about breaking out into a jog, however he literally couldn’t because of restricted movement in his legs. My theory is that it is still very early days and he has to be able to accept that it will be a slow process but he would like me to ask if there are any other sporting people that have had transplant and treatment who maybe have found that anything in particular has helped them get to the level of fitness that they were at prior to diagnosis?
Kind regards
Mandy
Hi Mandy,
for all of us it does take quite a bit of time to regain our fitness, though those that were fitter and more active beforehand might find it easier to get fit again due to being more disciplined in being active, but I would urge caution in making sure that your brother doesn’t try to overdo it.
There’s a good thread running at the moment over fitness and fatigue which I’ve shared the link to below. To me it sounds like your brother may be a little ambitious to be thinking about jogging at the moment as I didn’t even have the strength carry me up the stairs, let alone run for some time afterwards!
I lost a lot of muscle from my legs having being in bed for so long and that combined with overall fatigue meant I struggled. Once I did get going I found that walking the dog twice a day every day helped build up the strength in my legs again and regain some fitness but I can’t emphasis how long it does take to get back to ‘normal’.
Have a look at the following thread which has some useful discussion:
https://www.anthonynolan.org/patients-and-families/anthony-nolan-patients-families-forum\#/discussion/279/coping-with-tiredness
It's literally a case of having to learn to walk (again) before you can run!
Steve
Hello Mandy,
It’s nice to e-meet you 
I’m one of the new Online Community Champions, as of last week, and am just catching up with these messages. I hope you don’t mind me popping in.
It’s great to hear that your brother is doing well!
I am 5 and half years post Bone Marrow transplant and can totally relate to the fitness query so I just wanted to share my experience with you.
Before my treatment, like your brother, I enjoyed hobbies and keeping fit - and never actually thought the treatment would stop me from doing these things - but boy did I hit a brick wall after my treatment…
Like Steve has already said, it is literally like taking baby steps… I remember my first outing was with my dad, walking around Regents Park in London, and the very slow (but long) walk wiped me out for days! I remember walking up a few steps was a mission and would always get so out of breath. This was extremely frustrating for me as I was meant to be a fit and healthy 24 year old!
But after a little patience and determination to feel ‘normal’ again (both mentally and physically) I decided to sign up to a 5k run almost 2 years after my transplant, in the same park as where I had my first long walk after my treatment - Regents Park! It took a lot of training, but I managed to complete it …and 5 years later, my husband and I have just completed the 2017 London Marathon!!! Still can’t quite believer it actually! The last few years has definitely proved to me that you really can achieve anything you set your mind to.
Just on a side note however, it is so important your brother listens to his body and doesn’t over do it - it does take time and can be very frustrating, but like mine, your brother’s baby steps will definitely progress and get easier… and I’m sure his golf clubs will be back in his hands before he knows it! 
All the best,
Nichola x
Thank you Steve and Nichola
You both have reinforced what I have thought about having to take it slowly(which I’m sure is frustrating for my brother) and listen to your own body as over doing it won’t help long term and actually may set him back.
I’m sure he will get back to his level of fitness eventually but I do also understand his mind wanting to try to push forwards(albeit a little too early being day 37!)
I admire your strength Nichola congratulations on the London Marathon!!
Also to you Steve pushing yourself with your mountain climbing too!
Well done both and thanks again for taking the time to respond.
Kind regards
Mandy
Hi again all,
My brother is still doing well Day 55 today and no major issues to date so all heading in the right direction so far!
We were just wondering if anyone out there has views on when they began to feel more comfortable about getting back into society and being around general public again?
Also did anyone have any car insurance issues? Is there a certain amount of time to wait before driving again?
Many Thanks
Mandy
Hi Mandy,
Really pleased to hear the update about your brother - long may it continue!
Re: getting out and about again, probably best to check with your brother’s medical team to get a view on your brother’s specific position. For me, since transplant I took a common sense approach (and still do!). I had poor blood counts for about 8 months after transplant, so in that period I was very careful. After that, I relaxed a little but I guess I am still cautious and catch myself naturally avoiding large crowds and particularly anyone with an infection. But you can’t live your life wrapped in cotton wool either. I have 3 children under 10 so I could have spent all last winter in my bedroom but I reasoned that wasn’t going to do myself any good either. I guess my motto is look after yourself as best you can.
Re: driving, I actually never stopped. My consultant said I was not barred from driving but obviously I should not do it if I felt unwell. I also felt I had a responsibility to other road users. As long as I felt I wasn’t a danger to others, I went for it.
Hope this helps in some way.
Cheers,
Greg
Thanks Greg
That’s much appreciated again thank you. It sounds like you have to use common sense with situations and rely on the team to offer advice regarding individual circumstances.
My brothers work involves being in contact with quite a large number of the general public so I think he needs to air on the side of caution for now maybe.
He has only had a short spell away from driving (whilst having conditioning and transplant )but it was just something that the insurance man said to check with medical team also which we hadn’t thought that would be a problem, so wondered if anyone else had?
Its good to hear your recovery is going well too Greg
All the best
Mandy
Hello Mandy
Thank you for the update, it’s so great to hear he’s doing so well. Onwards and upwards!
I agree with Greg - in terms with getting out and about, everyone’s recovery is different so may be best to double check what his transplant team say… however it might sound cheesy but I found the best advise actually came within! Only your brother will be able to hear what he’s body is telling him… if he gets the urge to venture out, GO FOR IT! But just be careful and take it easy. Oh and I never left the house without antibac gel… still don’t
You can never be too careful but as soon as his blood count shows the ‘good soldiers’ are alive and kicking (which by the sounds of it, they already are) then it’s good to put them to practice I say Just don’t over do it!
For me, I was nervous more than anything - my appearance had changed a lot, and my confidence was knocked hugely. I had my transplant in the July, and my first big social outing was for a friends birthday in the Jan! So essentially it took me 7 months to socialise comfortably in a big crowd. In those 7 months however I did do little trips with my partner and mum to busy shopping centres etc which helped me gain my confidence a little before the big social events. I found it nerve racking but I took my time and these little outings helped me going forward!
But as I said previously, everyone is different, and your brother may find it easier but there’s no rush.
I then went back to work (part time) in the Feb, and having a bit of routine back in my life and familiar faces around me helped immensely
Re driving, again it was about how I felt and whether or not I felt ready. I think it only took me a couple of months until I was back on the road - the fact I could go ‘out’ but hide in my car, helped me feel I had my independence back but without feeling nervous about seeing other people…(if that makes sense?!) that got better in time of course, but driving for me was my first bit of luxury and I enjoyed having that bit of control again
I don’t believe there’s any special insurance he needs to get… but I do remember I was entitled to a blue badge, meaning I could park anywhere! Really helped with energy levels, as the little shopping trips were more tiring than i’d remembered, so being able to park near the entrance in the ‘disabled’ bays, was very convenient!
I didn’t like the thought of being under the ‘disabled’ category, as I wasn’t disabled at all (that was just me being stubborn) - but the blue badge definitely had its benefits, so may be worth looking in to for your brother!
I hope this helps and I wish your brother all the best!
Nichola
Just following on from the above, I have found the below link on the Macmillan website, which recommends you contact your local council to see whether he is eligible for a blue badge or not...
http://www.macmillan.org.uk/information-and-support/organising/benefits-and-financial-support/help-with-transport-and-parking/blue-badge-scheme.html
Might be worth a try
Hi Mandy
I am pleased that your brother is doing well, that is great. I just want to reiterate what Greg and Nichola have said, its all good advice.
Going out should be encouraged along as he feels ready and well enough but it is a balance. You do need to use common sense and avoid large crowds etc but its really important that he doesn’t isolate himself away. This is an essential part of his recovery and getting back to his ‘normal’ life, the reason he had the transplant in the first place.
There are no restrictions on driving other than he feels well and safe enough to do so. Great tip from Nichola about the blue badge, many patients do not even think about this and it will make his life a bit easier.
Keep in touch
Hayley
Thank you Nichola and Hayley some very helpful tips from both of you.
My brother always appreciates the input. He is back behind the wheel and it is good that he can get that independence back
Hi all,
My brother is still doing really well generally and quickly moving towards day 80 shortly, which is good news!
His medical team are now reducing his cyclosporine quite rapidly which is also good however it still leaves us wondering how other peoples experienced this time, regarding onset of gvhd etc?
If anyone has any specifically related problems or other tips at this time we would appreciate them?
Many Thanks
Hi Mandy,
Glad to hear that your brother is doing really well. Reducing cyclosporine around this time is fairly normal I think. You might hear doctors referring to acute and chronic GvHD - I think the difference between the two is whether it happens pre or post 100 days although I think the split is quite arbitrary. Acute tends to flare quickly and severely, chronic tends to be less quickly developed and longer lasting. They say some GvHD can be good as an attack against the disease but too much of it is bad, so it remains a balancing act to get things right. I had acute GvHD of the skin, liver and gut which flared up around Day 50. For me, it was obvious that I had GvHD - literally overnight, my digestive system stopped working and I came up in a blotchy rash on the trunk of my body. I didn’t have symptoms of liver GvHD - it came up in blood results and I think it was fairly mild. With chronic GvHD, I think you can get it in a lot more organs but thankfully I have not had any experience of that myself, but I know others on the forum have so hopefully will be able to offer insight.
My advice would be to try not to worry about it - there is nothing you can do to influence it and if your brother does get some, try to look on it as a positive as some of it is considered to be positive.
Hope this helps. Please ask away if I can help further.
All the best,
Greg
Hi Mandy,
Wow those 80 days seem to have gone quickly. It doesn’t seem like 5 minutes since we met at the Patient and Families day in Birmingham and at that stage your brother was about to start his transplant. I’m really pleased to hear he is doing well and it’s a good sign that his medical team are able to reduce his Cyclosporine.
I would say try not to worry too much about GvHD as it may not happen. It doesn’t affect everyone but if it does start then it can usually be controlled and treated. Your brother just needs to be aware of what is going on with his body and let his medical team know if he notices anything different or unusual, particularly with his skin, eyes or tummy. Fingers crossed he will get through this without any issues and continue his recovery unhindered.
All the best,
Steve
Hi Mandy
Glad to hear that your brother is doing well. As the CSA is being reduced he is more likely to experience GvHD but this is not a guarantee. So just be vigilant for any skin rashes or change in bowel habit and let his transplant team know if anything changes. Remember that GvHD is a good thing and it just needs to be controlled but if he doesn’t get any GvHD than that isn’t a bad thing either. So the best advice is to carry on doing what you are doing and just keep in touch with his team if and when he gets any symptoms.
BW
Hayley
Thank you Greg Steve and Hayley,
Indeed the time seems to be whizzing past quite quickly now and we are so glad he is still heading in the right direction thank goodness
Hi all well my brother is still doing well… bit of an understatement really, he’s doing great! This week he has had results of first bone marrow after transplant and he is in remission which is brilliant news to hear