This is a summary of the events over the past week which included a trip to A&E for a persistant nose bleed; stopping the MTX; extra blood tests which showed low potassium and haemoglobin; loads of phone calls and finally restarting the MTX, all against a backdrop of high blood pressure. The purpose is mainly for me to have a record of what happened and when - but I'm happy to share the experience.

I have high blood pressure which has been controlled with Bendroflumethazide (a diuretic) for several years, but recently it's been creeping up again and my GP restarted me on Lisinopril (ACE inhibitor)
2 weeks ago.

I'm recently diagnosed with RA after suffering a gradual buildup of symptoms over 3 years.

After RA diagnosis I immediately started a course of Prednisolone and the response was simply miraculous. I've now finished the course and symptoms are creeping back. Meanwhile my consultant started me on Methotrexate.

I had taken the first 2 doses - 10mg orally - and had no side effects, and was due to increase this last Monday to 15mg.

However, on the Saturday, I had a nose bleed which lasted about 4 hours before finally stopping. Then on the Sunday, I had another nose bleed which kept on going for 8 hours, and eventually I went to A&E. I'd been cautioned that nose bleeds were a possibility with MTX, but not about what to do if it happened, so I was pretty worried!

On the Monday morning I had a blood test as planned for the MTX, and rang the nurse to ask if I should stop the MTX as a result of the nosebleed. She advised waiting until the results came in (ie Tuesday)

On Tuesday, the results showed potassium (K) dropped to 3.0 and haemoglobin (Hb) down to 10.9, and she told me to wait until Consultant gave opinon re the MTX.

On Wednesday, the nurse instructed me to get a repeat test asap and to hold off the MTX pending new results
Also on Wednesday, I received message from a GP (not my usual one) saying to stop the Bendroflumethazide - rather disturbing but I questionned this and got my own GP to ring me to discuss - in fact he agreed that I should suspend the Bendro pending new results because it could be the cause of the low potassium - very confusing but at least it was clearly explained

On Thursday, I had the blood test - more calls from GP and nurse - a lot of talk but no clarity

On Friday, I rang for the results and my potassium was back up to 4.1 (just OK) but haemoglobin down further to 10.0 (acceptable range 12-15) - all else was OK. Still no confirmation about what to do re MTX, but GP agreed to restart bendro. I rang rheumy nurse and finally got agreement to restart MTX, but I am to have weekly blood tests for a month then fortnightly for upto 3 months and eventually mnthly

On Monday (yesterday) I restarted MTX and no side effects this morning so far.

Lessons learned:-

1. The nurse-led helpline at the hospital is very good, although I have to be persistent and very explicit with questions.
2. The doctor is often not there when the helpline is available, so it often takes 2 or 3 calls to get any actual decisions - so I must be patient and persistent
3. The GP is always a few days behind, because results take at least 2 days to get there and letters can take weeks - so I must keep detailed notes and point out key items of information so he doesn't overlook anything significant (2 weeks ago, the key letter from the consultant about my diagnosis never reached the GP until I kept pursuing it and eventually it had to be faxed through!)
4. I need to be well-informed and organise lots of relevant questions before I speak to anybody, and write down the answers as soon as I get off the phone
5. I need to keep a log of blood test results and talk actual numbers with them - it's too vague and confusing when they talk about "acceptable" or "high"
6. I need to take my own BP daily and keep a log which I can show the GP - that way he takes me seriously
7. I need to keep a detailed diary of all meetings, tests and key phone calls - they log everything by date and it can get very confusing when I have multiple blood tests in a short timeframe
8. I have to accept that this is very time-consuming and stressful, but I feel better when I understand what's happening and have some control over proceedings. I hate feeling that others are dictating to me, and I especially hate being in a position where I appear dithering and confused.
9. Positivity and persistance are my new keywords.

Thanks for reading this - keep well and happy - Sylvia xx

Thanks for the interesting blog Sylvia. I kept meaning to enter the figures of my blood tests in the little book, but haven't got round to it so far. After reading what you wrote, and Lyn's reply, I'm going to start doing this so I can feel more responsible for my illness. Please keep us posted Sylvia on how you're getting on. Thank goodness for the nurses line at Torbay hospital. We're really lucky to have it as some other people don't have this facility. I feel so reassured to know that a call to the nurse is easily achieved. Best wishes from Naomi.

Thanks for the excellent replies

Lyn - I've got the little booklet, and I'm starting to fill it in - very useful, thanks

Naomi - I agree that TAIRU is very good. Having read a few other posts I realise that this isn't universal yet and that's what the NRAS is campaigning about. I watched Ailsa's interview from a few months ago - very informative. Link here Guidelines in RA / Cardiovascular Risk

Suzanne - many thanks for reassuring comments - nice to know there's consistency in the treatments

THanks Rose - you are totally right about this being a brilliant site - but it's only brilliant because of the lovely, caring people who take the time to reach out and share their experience - thank you so much, t really does help me to know that I'm not alone

Sylvia xx

Hi Naomi - thanks for asking. I'm feeling pretty good atm. I think the MTX/hydroxy combo is starting to work - I feel less achey, but still get very tired when I do too much. I usually have a nap in the afternoon, but here I am at nearly midnight and feeling wide awake, so it's not all bad. I've had a really hectic 4 days with a big show jumping competition with my girls and then a day in London at the olympics, so I felt pretty cream crackered this morning - I woke up with really bad stiffness in my hands (no doubt from using my poles solidly for lots of walking), but it cleared quite rapidly and that's definitely better than before.

I've adapted to doing less physical stuff these days - and definitely no heavy work! Plus I focus on what I like doing and try to be philosophical about my limits - after all, we all inevitably slow down as we age!

I am still relieved that I know what I'm dealing with - it was much worse when I didn't have a diagnosis and I felt that everyone thought I was making it up! At least now I know how to direct my efforts at keeping on top of the RA rather than letting it control me.

Hope you're feeling better these days - Sylvia xx

Thanks for the kind words Naomi - I'm not feeling very calm atm - I'm watchng the cycling! Wow those thighs...........