My husband has WG and after over 3 years of treatment is now having problems with his bloods. Cells, platelets, haemoglobin have crashed.

[maira]

His bone marrow is not functioning properly. Has anyone had this and what does it mean? The hospital have done some tests but we have no answers yet. He had a blood transfusion today but is only a temporary fix.

[hamble99b Volunteer]

I am sure that someone will be able to answer tomorrow.

I'm sorry to hear he is so poorly.

regards,

sandra.

[maira in reply to hamble99b]

Thank you so much. The transfusion has helped bring some colour back to his cheeks and he is not cold all the time - but the sunshine today did help! We don't expect any results of tests yet and will be seeing the consultant in June when his meds will change no doubt.

[RichardE Volunteer]

Hi. I'm not 100% sure about this but I think reduced bone marrow function can be a side effect of the immunosuppressive drugs we take to control the Vasculitis.

I assume that your husband will be on something like Azathioprine, Mycophenolate, Methotrexate, etc ? These drugs suppress our immune system to stop it attacking us. However if the dose is not quite right the drugs can suppress things too much. This is why they have to continually monitor our bloods to check that our red and particularly our white blood counts are not dropping too low.

It sounds to me like your doctors are on the case with this though and I suspect that they will make changes to your husband's medication in order to address the problem. But I suggest you talk to them and ask if they can explain exactly what they think the problem is with the bone marrow and what they plan to do to help with it.

Hope this makes sense and is of some help. Let us know how you get on.

All the best,

Richard.

[maira]

We think the same Richard but our GP is not so sure. He had been on azathioprine and preds but came off the preds some time ago. He has subsequently reduced the azathioprine to see if his bloods improved but they didn't. They just kept tumbling. Last week he was told to stop altogether which is bit of a worry. He was on 150mg of azathioprine but is back on preds only at the moment. My worry is will the bone marrow recover? They wont say as they haven't confirmed why it has happened in the first place. I was hoping someone had been through this and could enlighten me a little. I just wonder if it is down to mismanagement of his meds but it is such a weird disease. Will let you know when we learn more. Thanks for your comments.

[hamble99b Volunteer]

I asked on the wg discussion site and was sent this by someone I trust :-

"My father dealt with this. The transfusion helped temporarily, but then he was given a series of shots to help build his red blood count. His counts are still low and cause him to feel really tired most of the time, but they are not so low as to require more treatment at this time. A bone marrow transplant was also considered, but his levels came up to a point that it was not necessary. "

[maira in reply to hamble99b]

Thank you for the info. I'm guessing that the shots were iron? I had it in the back of my mind that it might mean possible transplant. Fingers crossed it won't come to that in his case either. Thanks again.

[John_Mills Volunteer in reply to maira]

I'm pretty sure Richard is correct and that the problem has arisen due to the Azathioprine causing myelosuppression - suppression of the bone marrow where white & red blood cells and platelets are produced. Aza is well known for this, although many people take it for years without any problem.. But this is why it is so important to have regular blood tests with Full blood cell counts as the drop can be sudden and dramatic.

To the best of my understanding, myelosuppression due to Aza is reversible once the drug is stopped (unlike with stronger chemo or radiotherapy). However, it may take a while to recover as when the blood cell production restarts, the cells are immature and they need time to become mature & effective. So it maybe he needs further tranfusions while his own production comes up to speed!

All immune-suppressing drugs do have this myelo-suppressing effect, but they vary in the extent and from one person to another. Of course, other factors can play a part too, such as dietary deficiencies (eg of iron) or more commonly absorption problems where the essential ingredients are in the diet but don't get absorbed in the gut.

Hope this helps and gives some reaasurance. John

[maira in reply to John_Mills]

Thank you John. He has felt much better today following the transfusion and has done some gardening and DIY for the first time in ages. He has however had some blood from the nose already and a couple of spots on his face which look a bit red. Your comments are reassuring. Playing the waiting game now - fingers crossed his bloods will show some improvement.