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SueB
#1 Posted : Monday, September 06, 2010 8:09:39 PM Quote
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I have been on mtx since Feb10 and have struggled to get my dosage up from 7.5. I had 2 attempts at 10mg but had to go back because of dodgy bloods. I've now been on 10mg since 1st. July but I'm a bit worried about my latest results.
Today is the first time I've had my mtx book back since mid-June as the Rheumy dept is short staffed and buy the time they fill it in I've had to go for my next blood test (2 weekly) I had quite a battle to get it back today.
Anyway my ALT/AST has gone from 28 to 49 and my lymphocytes have dropped to 1.4. From looking at the back of the book these don't seem good.
I don't exactly feel ill, but I don't feel well either.
Unfortunately both my GP and consultant are on holiday until the end of the month and the nurse practioner is on long-term sick. She is being covered by a staff nurse who is nice but doesn't seem to have the same expertise. I'm sure someone must be keeping an eye but am feeling a bit insecure. I've got another bloodtest on wednesday so will have to battle again for my results.
Can anyone give me a bit of reasurrance? Am I being over-fussy to want my book back each time - I do feel very insecure when I don't know what my results are?
Sorry to go on so much.
SueConfused
LynW
#2 Posted : Monday, September 06, 2010 8:56:39 PM Quote
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Hi Sue

Sorry to hear about the problems you are experiencing with methotrexate and blood results. I have recently trodden a similar route but having been on methotrexate for 10 years so I understand your worries. You are certainly not being over fussy!

You are right, I believe, to be a little concerned. Your treatment/blood book should 'travel' with you and be up to date for all appointments. Mine does not leave my side!! I take it in to my GP surgery 5 days after my blood test and sit and wait whilst they fill in the results. I then monitor the results myself against what is normal for me. 7.5mg is quite a low dose of methotrexate but can be effective; it isn't always necessary to be on a higher dose to get a good result. Sometimes it is combined with other drugs to be more beneficial. I was on 10mg and okay but 'they' upped it to 15mg (for a better result) and my bloods went haywire causing neutropenia and I became very ill very quickly. Needless to say I'm now off methotrexate but it does make you appreciate the importance of up to date results!!

The lymphocytes are within acceptable tolerances at 1.4, but certainly need to be kept an eye on; the AST is a liver function test and that is slightly on the high side which may be indicative of something amiss. About 30% of patients on methotrexate have raised AST levels so not too unusual. However, I would definitely ask for your results to be put into your book promptly; my book is actually called "Patient Held drug Monitoring Record".

If the rheumatology dept. don't have the resources to update the book when required could they perhaps send a copy of the blood test results to your GP Surgery when they do the test. You could then ask the GP surgery to fill your book in for you.

If your next results are cause for concern, worsening, I would suggest making an appointment to see a different GP. It's possible the methotrexate may need to be reduced to stopped.

Do let us know how you go on after your next blood test. Fingers crossed there's some improvement.

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Lorna-A
#3 Posted : Monday, September 06, 2010 8:58:19 PM Quote
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Hi Sue,

Why do you not do your own results, I do and have done since I was ill. You just call the surgery up 2-3 days later and ask for the numbers to fill in your chart. It makes you feel in control and you know more or less right away. Take care Lorna x ThumpUp
Rose-B
#4 Posted : Monday, September 06, 2010 9:58:49 PM Quote
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Location: Somerset


Hello Sue and welcome

Sorry you feel anxious at the moment. When I was on MTX my GP surgery nurse would not complete my book
as well, I felt initally 'ekk' but when i had 3 weekly tests I used to ask the reception for a copy of my last blood
test. So I then could keep my book up to date. I felt like you - they tell you it is a bad drug and then they
do not appear to look after you.

Keep an eye on things, I had to come off as upset my liver.

Good luck and keep posting.

RoseThumpUp

SueB
#5 Posted : Monday, September 06, 2010 10:01:11 PM Quote
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Thank you both. I get my bloods done at the hospital as I can drop in without an appointment then I put the book into mtx box in the rheumy dept.To start with they were great and I always got my book back within 2 days. Now the system really isn't working. I know they send the results straight to my GP because in the past he has rung me within 24 hours when the results were a bit off. I will find out if I can get them to fill in my book.
I will be much happier when my GP gets back from his holiday as he is brilliant and really on the ball.
When I go on Wed for my next test I will ask to see someone for reassurance.
Thanks for your support. It is so good to have somewhere like this forum to get instant advice

love

SueSmile
Maria_R
#6 Posted : Wednesday, September 08, 2010 6:12:53 PM Quote
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Hi Sue
Just picked up this thread. At first I had problems getting my results. I've got a booklet which I keep myself. I was told that the rheummy dept would ring me if there was a problem but they didn't seem to have a system in place for me actually getting the results. They don't send copy to my gp. I can ring the helpline but they're only open Weds and Fri am and they never answer the phone- I have to leave a message. I decided to ask for a copies to be sent to my GP so now I can ring up and they print off a copy for me I just write them in the bookle myself.

Take care

Maria
SueB
#7 Posted : Friday, September 10, 2010 9:31:42 PM Quote
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Hi all

Thanks for all the support. I had my blood test on Wednesday and then went to have a long chat with the rheumy nurse. A doctor from my surgery rang me on Thursday to tell me that although my ALT/AST had dropped from 49 to 37 (sigh of relief here) my neutrophils had also dropped from 3.8 to 1.9. She said not to take my mtx on Saturday, go for another bloodtest on Wednesday and see what that shows. My rheumy nurse then rang today and confirmed that so I suppose it is a case of wait and see. I could do without all this!!!! I thought I was doing pretty well but am beginning to realise we just can't take anything for granted any more. Oh well, onward and upward.
Take care all
SueBigGrin
LynW
#8 Posted : Friday, September 10, 2010 9:50:48 PM Quote
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Hi Sue

Sorry to hear that you too ar experiencing neutrophil problems. At 1.9 the neutrophil count is below the accepted minimum meaning that you have neutropenia. In layman's terms your body will struggle to fight infections and you will be very susceptible to infections. I have had recurrent urinary tract infections which have required antibiotics to clear.

Certainly in my case the drop in neutrophils was caused by methotrexate. After 3 months of low neutrophil counts I had to stop it completely and continue with Enbrel only. Once stopped the neutrophils picked up, the number of infections decreased and for now I am okay. It does sound like methotrexate is not the drug for you so hopefully an alternative will be on the horizon that will prove more beneficial.

Do keep an eye open for possible infections; without adequate neutrophils they can sometimes turn quite nasty. Don't wish to concern you but speaking from my own recent experience I know how rapidly things can go wrong.

Take care Sue and keep us posted!

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

SueB
#9 Posted : Saturday, September 11, 2010 5:14:26 PM Quote
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Thanks Lyn. It just shows how useful this site is because although I knew this was a problem I really wasn't aware of how much a problem it might be. As a teacher I am exposed to all sorts of bugs but in the past I have rarely caught anything. I will have to be more careful now.
Thanks for your support
Sue
SueB
#10 Posted : Saturday, September 18, 2010 12:20:43 PM Quote
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Just had my latest bloods back and everything is in the acceptable rangeThumpUp Neutrophil level has gone up to 2.4 so I have to go back on 10mg mtx and see what happens.
Fingers crossed
SueSmile
LynW
#11 Posted : Saturday, September 18, 2010 7:21:57 PM Quote
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Good news. Let's hope the neutrophils behave now and let the methotrexate get on with its job! ThumpUp

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Julia17
#12 Posted : Saturday, September 18, 2010 8:31:06 PM Quote
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Hi Sue

Good to hear your news, hoping all goes well for you now.

Julia x
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