new treatments for AA

[rschem]

I have aa since Aug/2008.I am one of the luckey ones as I am partially recovered.My blood counts are hg132, wt6.2, pl136, nf4.4 creatine 116. I was just curious if there are any new treatmente or drugs for aa? I hve asked my DR about taking B12 suppliments. He doesn't think it would be of any benifit in my case.I am very thankful of my recovery but I would like to be better.I am mostly tired of being tired/fatiuged all the time.Isleep 9-10 hrs a night and have an afternoon nap for 1-2 hrs. My wife says I am just out of shape , mabey she is right.

[Ryan Jay]

You sound like a full recovery to me by most models. Well, not much has changed over the the last 20 years...most doctors will admit that they've gotten better at refining the tools already at their disposal.

The NIH has been working with Campath...but if you think about it, it's just a possible improvement on Immunosuppression. If you think of ATG/CSA as a musket blast...Campath could be a more accurate rifle shot.

We haven't found that nuclear bomb yet.

[Marlene]

You may want them to check your hormone levels, especially testosterone. John's was very low and he started using a topical, bio-identicle testosterone at a low dose and upped it over time until he got to mid-range normal level.

Also, do you know what your specific b12 level is? There are other nutrients that can help with fatigue as well. John uses CoQ10, and formula specific for mitochondrial energy. Also have your vitamin D levels checked.

Your counts are pretty good so I would expand your search for why you still feel so tired. Too many times, once you are labeled with specific disease, everything gets blamed on it.

[mscrzy1]

I'm a little worse for counts than you, but, I too, am having more fatigue than I should be. My hemo. dr. is referring me to a rheumatologist as well because he thinks that I may have an additional autoimmune disorder that is causing the fatigue. Have you talked to your hematologist about your excess fatigue?

[BerryP]

Hi I was diagnosed SAA in October 2010 and had ATG in November. I have heard today that ATG and Ciclosporine have failed and I am back at same low levels as before I started treatment. I am in the UK and my consultant is going to speak to the team at Kings and am back on transfusions. All seems a bit hopeless and they don't tell me a lot other than I have had some cyto genetics done which have shown up a clone and a genetic abnormality but not apparently one that is indicative of Hypo MDS. Don't see Consultant until another six weeks and find it very hard to know what is happening other than I am v. fatigued.

[Hawaii Bill]

Originally Posted by rschem

I have aa since Aug/2008.I am one of the luckey ones as I am partially recovered.My blood counts are hg132, wt6.2, pl136, nf4.4 creatine 116. I was just curious if there are any new treatmente or drugs for aa? I hve asked my DR about taking B12 suppliments. He doesn't think it would be of any benifit in my case.I am very thankful of my recovery but I would like to be better.I am mostly tired of being tired/fatiuged all the time.Isleep 9-10 hrs a night and have an afternoon nap for 1-2 hrs. My wife says I am just out of shape , mabey she is right.

I agree with others that you might want to have you testosterone checked, as I also found out that I was low on that, and now apply a daily gel. Hormones can also have an effect on your red blood levels, as I understand it.

Also, has your thyroid been checked? When I got my AA dx, I also found that I had Hashimoto's hypothyroiditis, another autoimmune disease which can easily account for fatigue and lethargy. I got a big boost in overall well-being when I started taking thyroid medication, and the hematologist says thryoid function is important to RBC production.

Exercise and diet also help a lot. It's a paradox, but you need to expend energy in order to gain more of it...

Best wishes!

[Lbrown]

I was gonna say thyroid too. Good luck, it's no fun being tired and fatigued at any count.

Deb

[Karenish]

Originally Posted by BerryP

Hi I was diagnosed SAA in October 2010 and had ATG in November. I have heard today that ATG and Ciclosporine have failed and I am back at same low levels as before I started treatment. I am in the UK and my consultant is going to speak to the team at Kings and am back on transfusions. All seems a bit hopeless and they don't tell me a lot other than I have had some cyto genetics done which have shown up a clone and a genetic abnormality but not apparently one that is indicative of Hypo MDS. Don't see Consultant until another six weeks and find it very hard to know what is happening other than I am v. fatigued.

I am in Shropshire so not far from you! had ALG in March of this year and showing very slow signs of improvement, not major but of course we don't want a huge rush as that is not healthy apparently!!! feel free to e mail me if you wish. There is also another lady called Julia and she lives in the Wirral, she is well on the way to remission. YOu must be feeling absolutely awful having been told it has failed, are they going to do another? rabbit is supposed to be stronger! hugs Karen

[Sara J]

It's good to hear from other people in the UK My husband Rich was re-diagnosed with AA last year, after a spontaneous recovery as a teenager. He has been on watch and wait since last April 2011. Fortunately his condition is not bad enough to need treatment but he suffers from fatigue and insomnia. Thanks for all the ideas on how to help. Does anyone know of any specialists in the Uk for treating fatigue related to bone marrow failure?

[Karenish]

Originally Posted by Sara J

It's good to hear from other people in the UK My husband Rich was re-diagnosed with AA last year, after a spontaneous recovery as a teenager. He has been on watch and wait since last April 2011. Fortunately his condition is not bad enough to need treatment but he suffers from fatigue and insomnia. Thanks for all the ideas on how to help. Does anyone know of any specialists in the Uk for treating fatigue related to bone marrow failure?

Hi,
I dont think any specialists exist for fatigue, however, pacing your activities does help - being an occupational therapist i have learnt through experience this part of our training (grin).
If you have stairs in your home get Rich to climb them on all fours slowly - i find this less taxing on the heart.
Move slowly around the house - sit down and do jobs - take naps often - drink plenty of water or fruit juice (muscles get more tired if they are dehydrated). Insomnia... make the bedroom a haven for sleep, use lavender oil on pillows, blackout curtains, no tv's, gentle reading, hot milky drink, warm bath or shower, same time every night and get up same time every day (Just written a booklet on sleep hygiene for where i work) good luck xx Karen

[Sara J]

Hi Karen,
Thanks for the advice. Rich hasn't been taking a nap during the day in the hope that he'll sleep better at night. A siesta is definitely worth a try Hopefully, the fatigue will gradually ease off. Although not too bad, Rich hasn't been able to get back to work full time, so our next big decision is what to do about his job as a teacher. Never a dull moment!

[Karenish]

Could he negotiate less hours with the school or get assistance with marking etc, something to at least reduce his workload? Us OT's often do this for our patients, there is always a way of reducing workload somewhere....fingers crossed x

[CatherineJ]

I'm sorry to hear about your husband's relapse. I have been recently diagnosed with MDS and my biggest complaint has been fatigue also and have had trouble sleeping. Your husband should ask hematologist for some sleeping pills. I think getting at least one good night's sleep can get you back on track. Also exercise can work miracles for insomnia and can actually help fatigue also. Just going for a walk outside rejuvenates me. My hematologist has basically said there isn't anything to be done when my counts aren't low enough to necessitate treatment. My counts are very similar to your husbands. I think also the fatigue that we suffer from bone marrow failure diseases isn't always related to blood counts, it is terrible and I'm sorry for your husband. Best of luck to you both

[Sara J]

Hi Karen and Catherine,

Thanks for your replies. It's always good to know you're not on your own. Part time work is a possibility and Rich's boss has been very helpful and understanding. Another option to look into could be early retirement as this has been going on for over a year now and is an illness unrelated to his job. The frustrating part is, we don't know if Rich will feel better a few months or years from now. Can I ask, Karen, if you work full time, how do you manage day to day? It sounds like you have a busy job yourself.

As for the insomnia, there isn't a problem getting to sleep, rather than waking during the nght. It doesn't seem to change no matter how tired he gets during the day. Exercise doees seem to help though. Is it the same for you, Catherine? We were also told the fatigue doesn't always relate to blood levels, also his Hb levels are looking good. He has been referred for CBT councelling to see if that would help. However, the nhs waiting list is ridiculously long and he hasn't started yet. If it helps, I'll let you know!

Sara x

[Karenish]

Hi Sara, I actually cope remarkably well my hb hovers around 8 to 8.5 so much less that hubbys! - but I do activity pace. I walk everywhere at a slower pace than normal. I don't stand when I am talking to patients I sit. Today I actually did nearly 12 hours I am very busy, but not overly active if that makes sense. Lots of my work is counselling and giving people coping strategies so the only thing that gets tired is my mouth!!!
I don't think your husbands fatigue is down to his blood levels as they are not far off the norm. It could be just his age, he made need a tonic, as for sleep...only use sleeping tablets as a temporary crutch, the body gets used to them after a while and they lose their effectiveness. I have just written a book on sleep hygiene and if you would like a copy (its only 10 pages or so) then please e mail your request to karen.miles@combatstress.org.uk and i will forward back to you the attachment - it has been written for veterans, but you can ignore this bit (grin). It is just full of tips to getting a good sleep routine and if you can follow it for about 3 weeks you should find you start getting better quality sleep. If I can help in any other way feel free to say
good luck
Karen

[Sara J]

Hi Karen,

You're right about sleeping tablets, certainly not a long term solution. Rich tried them for a week when he was still waiting for a diagnosis. They worked for a couple of nights but weren't as effective towards the end of the week.

Thanks for the link to your website. I'll be in touch!

Sara J x