Any one in UK with AA who has not responded to ATG and ciclosporine?

[BerryP]

I was diagnosed SAA in October 2010. Had ATG on the Wirral and at review last week was told no response and back to Hmgb 8.0, platelets .4 and white cells .3. Consultant said he will contact Kings to see where we go next and seems unwilling to try ATG again, whereas I thought they just kept battering you with ATG until something happened. Anyone with any thoughts I would be most grateful to have them, its been a little disappointing for my family who thought ATG was the magic bullet. Berry.

[julestheo]

Hi Berry,
I finished my ATG rabbit in Sept 2010 and am fortunate that I am doing well been transfusion independant for almost 7 months I was told when I had my ATG that if it didn't work within the 6 months then I would be given ATG a second time I had my treatment in The Royal Liverpool Hospital and I must say the Haematology department there is second to none I wish you well please keep posted on any development.
Best Wishes Julie





Diagnosed Aug 2010 SAA ATG Rabbit Sept 2010 still taking cyclo HB 11.1 Platelets 98 WBC 2.9 Neuts 1.9 as of May 2011

[BerryP]

Hi Julie, so great to know you are doing well. A month or two ahead of me in the cycle and your counts look great. Hope you are feeling good! I am with Arrowe Park and they are excellent, but I find it difficult to ask them questions especially when people around me are so poorly. Other than being extremely tired and a bit bloated round my middle (funny liver apparently from ciclosporin) I don't feel bad. I try to walk every day. Are you still working, cos my next issue is what to do about my job. Im 58 next month and could be a candidate for early retirement. Back to transfusions and as Hgb 8.0 they will want me back every 2 - 3 weeks. Have you had a bone marrow biopsy to see how you are after alg. Some of our bone marrow transplant guys go to the Royal for their treatment and when they come back they seem impressed. Our lot are very friendly, was there anyone else with AA on your hemo unit? Sorry so many questions but I have trawled american websites and become thoroughly confused. Stay well

[julestheo]

Hi Berry

I am going back to work very soon I work for the NHS Royal Liverpool Hospital actually but I work on a very busy surgical ward I am anxious about the risk of infection as I feel vulnerable but will be discussing this with the consultant and my manager they are very supportive. I have not had another BMB only the initial one (I would not be looking forward to another I can tell you!) You should just ask your dr's whatever questions you want infact writing them down helps as half the time you forget when on the spot I think if I were in your position with employment and was able not to return to work then I would just take life easy you have been through alot. I am feeling pretty well to be honest I also had bad liver with the ATG the levels were through the roof but settled down a month later and all is well now.
Hope everything goes well for you.
Juliex

[julestheo]

Hi Berry

Sorry regarding anyone else with AA I personally have not met them on the ward but there was a young guy just before they got me and he went on I believe to have a BMT and after me there was a young girl who went on to have a BMT apparantley he had the ATG first, but she didn't. ATG is differrent for everybody but it does have great results and we are all differrent some people just take a little longer for their counts to come up.

[BerryP]

hi jules v.glad to hear you are well enough to return to work. I guess you work in the right place. The staff at Arrowe are good and I should ask questions. I have requested early retirement as can barely look after myself at present -too b.....dy knackered. working on building myself up but low bloods make me dizzy and shaky. Still feel I need to get up and live every day. It is brilliant to hear from someone in the same country and talk about the practical issues associated with aa. Thanks for the messages, and good luck on going back to work. Berry

[julestheo]

Hi Berry

Thankyou so much for your kind words and YES it is lovely to have someone so close by going through the same thing as me please keep intouch and keep me posted on what you are upto and how you are doing and I wish you better health in your retirement.xx

[squirrellypoo]

Originally Posted by BerryP

Consultant said he will contact Kings to see where we go next

Hi Berry.

I just wanted to pick this part out because this is really a fantastic idea. Prof Judith Marsh at King's is one of the leading specialists and researchers in AA in the whole world, and she is just SO knowledgeable about the subtle nuances in AA. And if your AA turns out to be hypocellular MDS (as they're really difficult to distinguish), Prof Mufti is the equally superlative MDS specialist at Kings.

I had my transplant there two years ago and I really can't recommend them enough. Definitely have your consultant speak with them, and if it's at all possible, travel down yourself to speak with Prof Marsh about your results and future treatment options.

cheers, melissa

[julestheo]

Hi berry
The above is good advice Prof Marsh at Kings is "The Expert" and when I was having my ATG dr's at RLH liased with her as her knowledge is invaluable, Very best wishes to you..

[BerryP]

Hi Jules and everyone. Thanks so much for all your kind words and good advice. The Doctors are liaising with "London" so i'm guessing thats Kings and it can only be a good thing. So good to hear from "local people" because then you know they are affected by the same systems, referrals, etc as you are. Been struggling with american stuff! Thank God for NHS cos these things are expensive illnesses! Anyone any advice on flying when counts are low. Is there any sort of ban on what altitude it is wise not to go to? My lovely husband wants to take me on holiday and it seems truly pathetic to take up consultants valuable time with such questions, but if anyone can help i'd love to know. Thank you again for being such good guys.
Berry

[julestheo]

Hi Berry

My husband asked only the other week about us going on holiday and they said yes as long as its in the u.k or Ireland and at the time my platelets were 80, but I wouldn't hesitate to ask your dr's thats what they are there for any questions we all feel that we are taking up their time as it is but they don't see it like that and they will answer them for you, We are planning a u.k break anywhere would be nice just a bit of normality as I don't feel too confident at the moment going anywhere out of the u.k incase I got ill. Sure wherever you go you will have a lovely time

[Neil Cuadra]

Originally Posted by BerryP

Anyone any advice on flying when counts are low. Is there any sort of ban on what altitude it is wise not to go to?

Berry,

There's no hard-and-fast rule (blood counts vs. altitude) so each patient should ask their doctor. It's an important question so don't feel shy about asking. Ask about the length of the flight too. Going overseas could be riskier than hopping over to the European continent.

Patients with very low platelets are at risk of bleeding at high altitude, and bleeding in the brain is the most worrisome possibility. Patients at high risk of infection (from a low white count or absolute neutrophil count) have to worry about being in a confined place with strangers. Some wear a mask. There's less concern when counts are only moderately low and most patients can fly without problems. So it's a question of how low counts have to be before the doctor considers it too dangerous to take a flight.

Don't forget the practical stuff when traveling: We should all remember to stay hydrated and to move around once in a while during long flights. Patients should keep their medicine with them (not pack it in luggage that could get lost), bring along their prescription list and a description of their disease and current treatment, and know where to seek treatment, if necessary, in cities they will visit.

Rather than letting worries about these things take the fun out of traveling, I suggest that patients do the planning ahead of time so they don't have to worry about them while on vacation!

[BerryP]

thanks for your advice. He was thinking Beijing, so maybe saving that for next year. We do go out for days in England, Wales and Scotland and go away for a couple of nights sometimes so I don't feel deprived. My husband used to travel in his job and I think he gets a little stir crazy. Might try Amsterdam and see how things go. Thanks for the advice on prescriptions etc that is very sound. Pour encourager les autres, had a brilliant day today, even made some bread. Lovely sunny day and took advantage of extra energy to do some gardening! Nice to have some good days even if Hgb is low. Just shows what can be done.

[Polly S]

Hi All,

I am new to this site and after hours of trawling through, you seem to be the only english guys on here?

I was diagnosed with SAA 7 months ago aged 30, 4 months after the birth of my 2nd son . Until then I was in very good health. I was in and out of hospital for 2 months with repeated infections. I am currently being treated just with cyclosporin (150 twice a day) as Proff Marsh advised against ATG (very recent change in advice for patients of my age group apparently). My counts are pretty good, Hb 9, platelets 27, WCC 3 which is a massive imporvement. I have not had a blood or platelet transfusion for 6 weeks after needing them every 10 days for the 1st 4 months.

My question is, is anybody else just being treated with just cyclosporin? After the devastating diagnosis and everyone telling me that there was no cure except BMT, my counts have improved so much and it all seems too good to be true at the moment...

I am in Reading and would love to know if anyone on here is anywhere close.

Thanks

Polly xx

[Karenish]

quite a few of us brits on here lol - i have posted a reply on another thread for you. Your counts are good and appear to be responding to cyclo on its own. Mine are just climbing now and I had atg (BUGS BUNNY) and cyclo, but hey who knows if i hadnt had the atg maybe the cyclo would have worked on it own?
It is frightening when they say there is no cure except a bmt.....but, the way I look at it, if you regain your counts and go on living a "normal" life for the next twenty odd years.....then that's good enough for me!!!
Take each day as it comes, try not to get hung up on counts, its awful when they don't budge for a while, and embrace each new day! lots and lots go on to live their lives to the full with AA so try not to get bogged down with the sadder stories, yes they are frightening, yes they can make you feel depressed, but like my consultant said..."if you are living your life to the full having had the treatment and got better would you spend your time on the internet?" So in essence, there are loads out there with a positive story to tell, some take a few months some take longer - one lady on here took 18 months to get her full counts back, but she did it. and another lady on here was diagnosed 25 years ago and is still going strong!!!! good luck, and holla if it gets you down - this is a good website to just get courage back xxx

[BerryP]

Hi Polly, it occurs to me that pregnancy related AA is a different animal to idiopathic AA. Do they know if yours was pregnancy related? Also I have to say that having lived for nearly a year with the restrictions of low blood numbers and the utter exhaustion and mind numbing fog (perhaps thats just me looking for an excuse!) I am sorely tempted by BMT. The figures for 58 year old are not quite 50% alive after two years but there are days when I think the risk is worthwhile. Ciclosporin seems a much more reliable medicine than ATG. I have not responded to ATG at all, and exist on ciclosporin and blood tx. Doctors are great and they will give me more blood if I have holiday plans etc. Do you cope day to day with two young children because I can't even look after myself. Climbed a ladder yesterday and legs literally black and blue today. It bugs me that stuff I used to take for granted now has to be planned for and rested after and I feel I am wearing out the sofa! For you, this Prof at Kings seems incredibly highly regarded and there have been lots of trials on ATG recently especially the rabbit stuff. ATG was not rough for me and I would not mind going through it again, it does usually mean 3 weeks in an isolation unit but the actual treatment for me was 14 hours per day on a drip for five days then sit and wait. I got the shakes which was funny and a couple of days of teeth clenching and one horrid night of bad tummy and head.

Your numbers seem to be moving up quite well and they would not normally transfuse at 9.Hb. Sometimes this is a sit and wait disease and provided you are coping on the ciclo and your cytogenetics look okay the doom and gloom prognosis just won't fit your case. My advice is do what you can when you can, if you can and ask questions of the docs. Maybe take someone in with you when you see them, we are often such poor advocates of our own condition whereas someone else can tell it like it is. I took my husband in last time and got some really good answers (not nice ones but good to know) because he told the doc how I really live, i.e. in purdah, resting after even one flight of stairs, not walking properly because antibiotics swell my achilles tendons, hot and cold, can't drive, confused etc. I would never have bothered the docs with that kind of detail but he took pity and gave me extra blood so had a ball for two weeks!

[Michellekidney]

Hi there guys.
I hope you don't mind me jumping on here to pick your brains a little

I am a kidney transplant patient from the royal liverpool. but having acute rejection for which it looks like I'll be having atg in an attempt to save my transplant over the next couple of days/2 weeks.

Do you have any words of advice that I can take on board as I head into this treatment ? Am travelling a bit blind.
Great to see a few locals out there in uk
Cheers mk

A few stats. Hb 8 potassium 3.0 creatinine over 400 anion gap 21 bicrb 18