Increasing methotrexate dose tonight and worried by m... - NRAS

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Increasing methotrexate dose tonight and worried by my GP.

Well I've been on 7.5mg mtx for 2 weeks now and I'm due to increase to 15mg tonight. I've confirmed with the Dr's surgery that my bloods are all ok so fingers crossed for a positive outcome.

I'm feeling a little..well a lot unsure about my GP's at the moment and seriously considering finding an alternative practice. Today I found a message on my phone saying to call the surgery. When I called I was told there was a prescription waiting for collection and blood test forms. The receptionist said that following a letter from the rheumatologist I was to start methotrexate and have weekly blood tests? I told her that I'd started my treatment 3 weeks ago and was already having blood tests! Well it appears that it has taken until now for the rheumy's letter to arrive and the GP had failed to notice my treatment had already started. Even though they prescribed the meds and I've been in for a chat!. To be honest when I got off the phone I was quite upset. To be on powerful medication is one thing but to feel that the GP doesn't even read my notes before prescribing does nothing to make me feel confident about my care. This has come after them sending my rheumatology referral a few months ago in error to the local private hospital so I wasn't even on the waiting list when I needed a diagnosis. I know it is a big practice but you would think that after being with them for 9 yrs they would see me as more than a number. Maybe I'm being sensitive but I'm feeling really angry about it. Right from the start my treatment has been a total mess. I'm considering making a complaint so maybe they'll start taking more care.

I feel better for getting that off my chest. I do like having somewhere to sound off because otherwise I think I'd implode! Hope you are all doing well and have plans for a good weekend

Paula x

21 Replies

Paula I understand to the last decibel how you are feeling! Have you taken the 15mg yet? I did exactly this only after a month - I was feeling rubbish with very swollen hands so went to see a young probabtioner GP because the others were fully booked and Xmas was coming. He took the rheumy at his word and said to go up to 15mg. Well I did and then when I went to see my own very experienced GP a few weeks later for my blood tests he was quite grumpy with me (or maybe he was just grumpy anyway?) and said that he felt this jump in dose was a mistake. Then phoned the next day to say yep I was right your liver is up come down to 10mg and rise more slowly to 12.5 etc. I now avoid young probationer - who looked in fascination and incredulity at my RA hands I don't think he'd ever seen RA in action before!

I don't think it's right that your GPs aren't being more with it - all this should be on your notes on a central practice computer? Tilda xx

when I started MTX I started at 7.5mg and went up in 2.5mg jumps so it was slower, but meant that I adapted to it slowly and had no problems. Doubling the dose in a week does seem a big difference. I wonder whether you could double check?

Re not feeling confident with your GP, Is there another one at the same practice that you feel better about? Although the glitches you describe could well be poor management/administration rather than the actual GP perhaps? Polly

Yes Tilda I've taken the 15mg now. The rheumy said to take 7.5 for 2 weeks and up to 15mg the third week. My bloods were ok on the 7.5 so fingers crossed that I tolerate the increase. My esr has dropped to 28 which is good news but I don't know if the steroid jab could be responsible for this. I agree that all my notes should be on the computer. How could it be missed? Very strange.

Paula x

in reply to

Well not to worry now and sure you'll be fine. My rheumy instructed exactly the same rise but then my GP seemed to prefer caution and he's the one doing the prescribing not the rheumy so guess he has the ultimate say. I think the consultants tend to be more cavalier about the drugs because they don't have to do the week to week monitoring and they also seem a bit less cautious about our livers. Mine wants me to go up to top dose of MTX whereas my GP isn't keen on this and I'm grateful to him for his caution.

I also think the GPs here are mindful that they are likely to bump into us in the supermarket or the post office. Mine came and looked round our old house when it was for sale and he and his wife were newly arrived. I recall the boys (who were crawling toddlers) gave him lots of gooey pieces of lego which he later sent to me in an envelope because he didn't want to offend them by refusing it! So when he looks at my sons he can remember this perhaps and it makes it harder to be impersonal. That said he does his best to be the cool professional - I think he's worried that women patients seem to fall for him rather a lot but he's a bit squeaky clean for me!

Why don't you see if you can find a smaller, less impersonal practice perhaps? I can see it's going to be hard to trust them after these major hiccups whether it's the admin or the the GPs themselves. TTx

Hi Polly, the surgery is awash with GP's as it's so big and when I get to see the one I like she is very good. I just feel worried that they are so big things are being missed. I think I'll write a letter to the practice manager asking how this could happen.

Hi Paula,

I've only recently started on MTX. Started at 10mg then to 15 and then to 20mg which is the dose I am on now.

I don't get the results of my blood tests, apparently that's not how the system works here and it takes roughly 6 weeks for the Rheumatologist to write to my GP after consultations. I quite agree with you, it's not very efficient.

My next consultation was meant to be on the 25th May but has been put back a couple of weeks, haven't a clue why.

A complaint might just make them sit up and think!

Good luck. Hope you get on ok with the increased dosage.

Mary

in reply to

Just caught you before signing off Mary. Glad all is going well for you. To be honest nobody mentioned calling for blood results to me but I have so little faith now that I'm only happy if I check they're ok before continuing to up my meds. Changing appointments and putting appointments appears to be the norm unfortunately due to cutbacks. I was advised my rheumy dept has a 12mth backlog! It must be a very stressful environment to work in. I wouldn't want to do it. x

cathie profile image
cathie in reply to

You do have a right to see your results but they may not come automatically its good to see them though

In the meantime I'm going to take a shower and put my feet up to watch Dexter on tv. There's nothing like a good serial killer drama on tv to take your mind off your troubles. Goodnight all and catch you tomorrow. x x

allanah profile image
allanah in reply to

Luv dexter too

Axx

Night Paula, enjoy the tv.

Mary

Hi Paula, few years ago I had an unusually high liver reading while on leflunamide. Had a blood test done on the Wednesday, Friday night my rheumy consultant rang me to say reduce the amount. Half way though the next week my GP rang me to say the same and he was suprised to find out that my rheumy consultant had already spoken to me.

Perhaps your rheumy nurse may be able to give you the results of your bloods if you phoned her and explained that you were unhappy about getting the results from your GP's.

Hi Judy, thanks for your suggestion, it's worth a try. I've not had any contact with the rheumy nurses so I'm not yet up to speed with their services yet. My next appointment on June 19th is with the nurse though so I'll go armed with any outstanding questions. Up to now I've found all of you lovely people have been the best source of information. Coupled with a lot of reading as I'm aware were all just experienced amateurs, or in my case inexperienced!

Paula x

If you have the blood tests done in the surgery the nurse should be able to write them in your monitoring booklet for you and you can check them yourself each visit. People on DMards especially mtx should have a monitoring booklet.

My Surgery is big but I get very good service.

I have my blood taken at my GP's surgery, but the local hospital does the actual testing. If I am over week late having the tests done the "Computer" writes me a snappy note saying "Get them done".I tried to buck the system as I was immobile with a foot injury, but the rheumy nurse said I must go...my Consultant does all the prescribing of Mtx - my Gp confessed she doesn't know much about it & just prescribes what he asks!!. Hey Ho - so much for the NHS - mix & muddle would be a good name for it!! Just got to keep a strict watch on what is going on - the days of the old fashioned GP you can trust seems a long way off.

in reply to Kathyfitz12

That sounds about right Kathy. I intend to keep my beady eye on everything as ultimately it's my health that will suffer if a mistake is made. I don't care if they think I'm a pain in the a***, I intend to ask questions and learn as much as possible along the way.

Paula x

hi i am on same now and get 2 weekly bloods done and ok as also take etanercept too but its just make sure all ok etc nothing to worry about.

in reply to steven73

Hi Steven, thanks for your message. It does make me feel better to know everything is being monitored but I look forward to having a bigger gap between blood tests too as I've only had one up to now and have a corker of a bruise. I'm going to look like an injecting drug addict at this rate. x

Hi Guys,

Its been a while.

Hi Paula, from another Paula.

I started straight on 15mg from the rhuemy, unfortunately i had to lower it to 10mg because i could not tolerate the dosage. I have had the folic acid upped. From my appointment in april there is a two month delay in letters getting to the GP so i am the messenger between the rhuemy and gp at the moment. Am due to start sulfrazaine on top of the mtx so see how we go, back to bi weekly bloods for a while, thats another trip to hospital because my gp does not do blood tests. Lots of luck with the increase. hope it works out. take care.

Hi Paula, lovely name you have by the way :-) Sorry you didn't get on with mtx but 15mg does seem a high dose to start off on. I thought we normally started on a low dose and stepped up? Good luck with your new treatment and hopefully it does the trick for you. I feel ok right now on the 15mg dose so fingers crossed this is mirrored in the blood results. x

Well done Paula. I left my GP a few months ago ,if he had done tests a 1 yr ago I would be starting on Methotrexate. Due to start it in next couple of wks very anxious.

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