New member from the UK, Polly S's story

[Polly S]

Hi all,

I am 30, from Berkshire, England and was diagnosed wih SAA in dec 2010 following weeks of heavy menstural bleeding, huge bruising and generally feeling awful. I had only given birth to my 2nd son 4 months previously however so I was putting all my symptons down to exhaustion!

After 2 bone marrow biopsies I was diagnosed with SAA. Pretty devestating as you all know but a strange relief at he same time as I had convinced myself I had some sort of leukemia. My sisters were both tested but unfortunatly neither were a match (they are a match for each other - what are the chances!!!).

My consultant at the time wanted to sit on me and see how my counts progressed. But after 4 admissions with neutrapenic sepsis over the next few weeks and 2-3 units of blood and a pool of platelets every 10 days, he decided it was time to crack on with the ATG.

Unfortunatly though, the day after my chest line was inserted for the ATG I got a raging septacemia from it and line was removed and the ATG was cancelled. This, as it turns out, may have been a blessing in disguise. My consultant decided it would be worthwhile refering me to Proff Marsh at Kings College Hospital in London. When I saw her she was totally against me having the ATG as very recent research has shown Rabbit ATG to be high risk for peple of my age group (horse ATG is not available in the UK at present).

So the proff started me on cyclosporin (150 twice a day). That was 3 months ago and my counts have improved massivly. I have not had a blood or platelet transfusion for 6 weeks (although they are still quite low) and my neut and WCC is practically back to normal!

I had a repeat BMB last week and am waiting for the results. It all feels too good to be true at the moment, but fingers crossed...

I still have ongoing problems with serious fatigue even with an HB of 9, continual, non stop menstrual bleeding and now a ferritin level of 3100 but I am feeling quite positive.

I have so many questions, all the time. My unit are good but not very knowlegable about AA and there is no one else there being treated for it so it is quite isolating. My family, particularly my husband are fantastic but I am desperate to chat to other people who are going through this. Hopefully I might find them somewhere on this site.

Thanks for the space to ramble and vent!!
XXxxx

[squirrellypoo]

Hi Polly.

That's wonderful that Cyclosporin has had such a great affect on you, and just in time! I've had all my treatment at Kings (luckily, I only live a bus ride away) and Prof Marsh is just WONDERFUL. You were really lucky to see her at the right time!

cheers, melissa

[BerryP]

Hi Polly, good to hear you are feeling ok apart from extreme fatigue with Hb 9. I have SAA and my figures are generally pretty low, Hb 8, neuts 0.4 platelets 40 and going down. However unlike you I am infection free and although rabbit ATG did nothing for me, nearly a year later and I am back where I started, they do not think a bone marrow transplant would be good for me. The folks at Kings say too high risk at 58 years old and relatively stable so staying on the cyclosporin and blood transfusions. Do you have any genetic changes, I have trisomy 15, which we are uncertain is relevant to any prognosis. Can they put you on the pill or something that stops menstrual bleeds to stabilise you? My periods were the worst time for me, I felt quite literally as if I was dying standing up. Would you go for a MUD? Have they offered you neupogen to bring up your white counts? I worried at first because americans seem to know so much more info about their illness, but I do feel the NHS has some great experts and the fact they are willing to consult with others is a good thing for us. Having small children and SAA must be really tough, I hope you get some help - some days I find it difficult to keep myself stood up let alone look after others! Do you get the funny shakes with the cyclo, or the hot flushes or the muddy brain? The figures for a BMT for your age are really positive so that seems a nice thing to have the choice. Stay well, stay in touch and good luck.

[Greg H]

Hi Polly!

Not to be a guy jumping into a ladies' discussion, but I mentioned this to my wife, who wondered whether using depo-provera to generate a sort of induced menopause for a few months might be an option.

She had this done years ago to try to clear up some endometriosis-related issues. Might be worth chatting with your docs about as an option.

Take care!

Greg

[Karenish]

Originally Posted by Polly S

Hi all,

I am 30, from Berkshire, England and was diagnosed wih SAA in dec 2010 following weeks of heavy menstural bleeding, huge bruising and generally feeling awful. I had only given birth to my 2nd son 4 months previously however so I was putting all my symptons down to exhaustion!

After 2 bone marrow biopsies I was diagnosed with SAA. Pretty devestating as you all know but a strange relief at he same time as I had convinced myself I had some sort of leukemia. My sisters were both tested but unfortunatly neither were a match (they are a match for each other - what are the chances!!!).

My consultant at the time wanted to sit on me and see how my counts progressed. But after 4 admissions with neutrapenic sepsis over the next few weeks and 2-3 units of blood and a pool of platelets every 10 days, he decided it was time to crack on with the ATG.

Unfortunatly though, the day after my chest line was inserted for the ATG I got a raging septacemia from it and line was removed and the ATG was cancelled. This, as it turns out, may have been a blessing in disguise. My consultant decided it would be worthwhile refering me to Proff Marsh at Kings College Hospital in London. When I saw her she was totally against me having the ATG as very recent research has shown Rabbit ATG to be high risk for peple of my age group (horse ATG is not available in the UK at present).

So the proff started me on cyclosporin (150 twice a day). That was 3 months ago and my counts have improved massivly. I have not had a blood or platelet transfusion for 6 weeks (although they are still quite low) and my neut and WCC is practically back to normal!

I had a repeat BMB last week and am waiting for the results. It all feels too good to be true at the moment, but fingers crossed...

I still have ongoing problems with serious fatigue even with an HB of 9, continual, non stop menstrual bleeding and now a ferritin level of 3100 but I am feeling quite positive.

I have so many questions, all the time. My unit are good but not very knowlegable about AA and there is no one else there being treated for it so it is quite isolating. My family, particularly my husband are fantastic but I am desperate to chat to other people who are going through this. Hopefully I might find them somewhere on this site.

Thanks for the space to ramble and vent!!
XXxxx

Lol join the UK club, we are similar I was diagnosed in January 2011 - I was able to have rabbit at age 50!! got through that okay...in fact....very easily!!! counts have just started to rise, plates were 41 on monday, whites 2, neuts 2 and hb 8. My consultant Dr. Amos is in touch with prof. marsh all the time so we are lucky in the UK that its such a small country in some respects. My biggest advice would be not to trawl the internet too much, there are lots of negative stories out there! BUT remember we are all unique, the diagnosis may be the same but the outcome and rate of healing can be very different...bit like child birth!! Did they mention that some do get SAA due to pregnancy? I have a theory that for us ladies it can be triggered by hormones! but, hey, what do I know? glad to hear your counts are on the up! just rest when you need to, hard with kidlings!!! but try to listen to your body. I am already back at work, have stayed infection free since 2 years before diagnosis so count myself extremely lucky, touch wood! My ferritin level is high so am about to have an eye and ear test to go on Exjade to lower it and doc is putting me on northesterone? the pill! so i dont have periods, as my first one which i had last month was so frightening, i thought i would bleed to death!! so maybe consider doing that! There are positives to this..... we are having regular blood tests so any change in health will be spotted straight away, its not degenerative and providing we look after ourselves our lives can be near damn normal. Best of luckxx Karen - Staffordshire

[squirrellypoo]

Originally Posted by Karenish

doc is putting me on northesterone? the pill! so i dont have periods,

Please, please get your haematologist to confer with a gynae/endocrine specialist before they put you on Norethisterone! I've had two separate g/e consultants tell me that Norethisterone was a big contributor to the massive hormonal problems I've had post-transplant, and these could've been avoided by giving me different meds to stop my periods instead! It was great while I was on it, but as soon as I tapered off, all h*ll broke loose, and I'm STILL working through those issues 18 months after going off it.

[Polly S]

Thanks for all your comments, Karen, it is really good to hear you being positive. You are right, there is a lot of negative scary stuff on tinternet.

Melissa, do you mind me asking what the problems are that you have had since coming off Northisterone? I was on 10mg 3 times a day for 7 months and have now been swapped on to the mini pill. the bleeding continues but I have turned into an intermittent raging emotional paranoid psychopath which I am putting down to hormones. I thought it might be the mini pill but it seems like an excessive response to something that many women are prescribed.


BerrP, yes I do have a muddy brain but I am not sure what is down to the cyclosporin and what is down to left over pregnancy brain! I do get the shakes, but at random times, very unpredictable. Makes me feel very queasy too.

Greg, thanks for the input! My gynae doc has threatened to give me down regulation drugs to induce a menopause but I am less than keen on that so I have just stopped complaining about it to them and hope it goes away. Nothing like burying your head in the sand eh?!

Thanks again for all the advice, glad I have found this site

Polly xxx

[squirrellypoo]

Originally Posted by Polly S

Melissa, do you mind me asking what the problems are that you have had since coming off Northisterone?

To put it mildly, it was like I had menopause and puberty at the same time. Off the top of my head - hot flashes, zero periods, hair loss of my eyebrows and arm hair only, vaginal dryness, zero libido, and HORRIFIC acne the likes of which I'd never seen even as a teenager. Acne so bad little old ladies came up to be on the street and told me to "drink more water, dear" like I was some idiot who brought this on herself. The acne and lack of eyebrows were the most humiliating, but the loss of libido has been the most difficult to fix.

[cheri]

Melissa, you are my hero! What you have been through kid, would have killed an elephant! Each time you post, I am amazed... Keep on keeping on!

[Karenish]

Originally Posted by squirrellypoo

Please, please get your haematologist to confer with a gynae/endocrine specialist before they put you on Norethisterone! I've had two separate g/e consultants tell me that Norethisterone was a big contributor to the massive hormonal problems I've had post-transplant, and these could've been avoided by giving me different meds to stop my periods instead! It was great while I was on it, but as soon as I tapered off, all h*ll broke loose, and I'm STILL working through those issues 18 months after going off it.

THanks for this melissa, i shall certainly mention it - however at 51 one is hoping that mood swings and periods will soon be a thing of the past!! I thought I was already peri menopausal, but they did a FSH test and I only scored 35 - one of the chemo nurses did one too (we are the same age, and she scored 145 so she really is going through menopause)
xx