was doing well but......

lizzy100

ok so its been a couple of weeks? Ive been on steroids and MXT and i was 100% better. No pain! then yesturday i started back at work and did a lot of walking today and tonight in agony. my hand kills (been writing?) and legs. and im soooo tired i feel i'll just go to bed. I dont know what to do about painkillers because i was concerned i was taking too much paracetamol that it was giving me headaches. I dont know what i can take thats safe. ?
i incr the MXT last week to 17.5 so i guess maybe it would still be taking effect. iv been getting od brusies everywhere the last couple of days too, but iv had loads of blood tests the last week or so so think im all good for that.

stickywicket

If you've been doing rather more than usual that could account for things going wrong even though they've been going right up until now.

We can't advise on pain relief as we don't know what meds you're on but, if it was OK for you to take paracetamol before, and nothing has changed, then presumably it's Ok for you to take it now. Only you can decide if the possible headache's better than the joint pain.

If the bruises are just on the site(s) of blood tests that's usually fairly normal but if you've got a lot of unexplained bruises, or it's very bad, I think you should tell your rheumatology nurse.

frogmella

As I understood it the paracetamol headache thing only really happens if you are taking the paracetamol for headaches in the first place. I have been taking the max daily dose of paracetamol for well over a year and don't get headaches, but then I suppose I don't normally get headaches anyway. I have just checked and I was right - you get rebound headaches if you take paracetamol for tension type headaches too often so taking it for other pain shouldn't cause headaches. I hope that helps. Obviously I am neither a doctor or pharmacist so I could be wrong so if you are worried check with one of those people.

lizzy100

I dont have a rheummatology nurrse or doctor. they arent bruises at blood sites they just appear in random places for no reason, but iv had lots of bloods lately so if something was abnormal theyd of known.
I started geting migraines and you arent meant to take paracetamol more then 15 days a month, maybe even 10, and i was taking it every day really. so now theres nothing i can take for pain. :roll:

LignumVitae

Hi Lizzy,

Who prescribes your MTX? Normally that is done by a rheumy.

I have been taking paracetamol for years and was told to do so by my Rheumy. It has been my sole source of pain management through pregnancy and I regularly take the max dose for a month if my joints are sore (the arthritis has backed down but the damage it did still hurts) so I'm not sure where the info about 15 days comes from. I know it is used regularly by many people. I, for one, have never had a paracetamol headache though so can't really relate to that.

It does sound like you should contact whoever prescribes your meds, particularly with regards the bruising.

Let us know how you go, LV

lizzy100

thats what the neurologists said about the paracetamol.
my old rheummatologist started me on methotrexate but my GI dr took over my care and increased it. theyd only say to have bloods done which iv already had done and they were ok.

stickywicket

I'm sorry, Lizzy100 but what's a GI doctor, please? It's not a term I'm familiar with. Is the doc a member of your rheumatology team? I, too, am puzzled by your not having a rheumatology nurse. Have you not been given a helpline number? (Do you have a Methotrexate Booklet in which your blood results are recorded?)

I wouldn’t assume that because you’ve had lots of blood tests they’d have picked up on anything that was amiss. That would depend on what they were testing for.

I know that paracetamol can cause headaches but I agree with frogmella in that I think this is only likely if you were taking it for headaches in the first place. Many people on here take paracetamol or cocodamol daily and don’t get headaches. If in doubt, ask your pharmacist but be sure to explain what other meds you're on and what conditions they're for.

I really feel, like LV, that, this bruising should be checked out by a member of the rheumatology team.

barbara12

Hi Lizzy sorry I cant help with meds, but like SW says maybe you have overdone things...its just not fair is it...I do hope you pick up very soon ((((()))) xx

frogmorton

Oh Lizzy

you must rest up and see if taht helps you feel a bit more yourself :?

I am one who DOES get painkiller headaches. If I need to take paracetamol too often. That's one of the reasons l am on bu-trans patches - no paracetamol in them

Take care now

Love

Toni xx

lizzy100

oh what are the patches Toni? there seems not a lot i can take for pain because i cant take codeine based things with my IBD.

GI is gastroenterology. I dont have a rheummatology team- I have IBD arthritis, and no i never got given a rheummatology nurse and i never got given a Methotrexate book, noone even explained side effects to me they just put me on it.

I did have my clotting checked last week, but i had more bloods done today and they checked clotting again because i showed her the bruises.

joints are killing all from 2 days of walking alot at work. Have to go back to work tomorrow and im so tired i feel lie im going to collapse and my joints all kill and feel lie i can hardly walk. but dont have a choice about going to work, and i cant just never do anything because of this. :roll:

lizzy100

Gastro-intestinal

dreamdaisy

What does a gastro bloke know about arthritis? (That is a question, not an Australian-inlfuenced satement.) When my liver went through a deranged phase thanks to enbrel I was referred by rheumatology to a gastro-enterology chap but he (sensibly) left the arthritis stuff to them. If you are being dealt with by someone who isn't a rheumatologist then no wonder you don't have the back-up in place that I (and others on here) do.

I'm staggered that you are taking meth with no proper reason given and with no method of recording your blood test results. Bruising is a mal-indication, the tiredness may be due to the stress of work but more likely because the arthritis is active. DD

salamander

Who is monitoring your mtx use Lizzie? Your gp or your GI person? I'm slightly in agreement with DD over being surprised you have no support over your mtx use.

You say you've been on steroids - are you saying you've come off them? I am wondering why you've suddenly flared like this and whether you've stopped taking them without tailing off.....? When I've finished a prescribed course it normally takes quite a while for them to leave my system though it is dangerous to suddenly stop taking them.

As to paracetamol, I do know, though not giving anyone any advice here, that good pain control often relies on taking the paracetamol (along with other meds if prescribed) regularly and not waiting for pain to escalate in order to take them, i.e. every four hours. I've never heard of being limited to a certain number of days of usage but then don't know your other health conditions. You could check with your GP of course. I don't imagine your doctors would want to leave you without any pain control at all.

Hope you are feeling a bit better tonight.

stickywicket

I'm familiar with IBD but not IBD arthritis. Could you explain what it is, please, Lizzy100? I guess this is why you have a gastro consultant prescribing methotrexate but, whoever prescribes it, you should, and must, be monitored. Please insist that you are. And get those bruises checked out.

lizzy100

My gastro consultant is now dealing with my IBD arthritis because its a complication of IBD (inflammatory bowel disease) and rheummatology didnt know enough about it. the guidelines for treating arthritis associated with IBD come under the guidelines for treating IBD.
I did see rheummatology and he was rubbish, wouldnt give me an arthritis nurse or any support. so im no worse of now then i waqs with rheummtology, theyr just all rubbish.
i was started on methotrexate because the first rheummatologist said he thought i had IBD arthritis.
sticky its a type of inflammatory seronegative arthritis.
My GP monitors my bloods for the methotrexate. my gastro dr increased it a few weeks ago.

steroids i started on 40mg and i was brilliant with no pain until i got down to 15mg which im on now. im in agony and my hands are red and swelling. so dont know what i do now.

stickywicket

Thanks for the info, Lizzy100. That's all new to me.

I don't think I'd be happy with just my GP monitoring my bloods although they're very good at my surgery. You should have the results of each blood test recorded in a booklet and should carry the booklet about with you at all times.

How's the bruising today? Have you shown it to someone?

lizzy100

i havent had any new bruises so think its better, i left a message for my GP saying about it to check my blood results.
I wasn't aware that there was a book for methotrexate. they never give you your blood results here, when iv rang and asked for them i was told they arent aloud to give you the values as they arent trained to read them or some rubbish. they can only say if theyr normal or not. :roll:

dreamdaisy

I suspect you are falling between two stools: IBD is one condition but an associated arthritis must surely come under a rheumatologist as your joints are being affected. Not all rheumatologists are rubbish - they are human and ergo have their faults.

Meth is used to treat a number of medical conditions but my sole experience of it is as a rheumatological drug. My hospital is a teaching one so I kinda 'fell into' the support network of rheumatology nurses and a helpline but even so I didn't gain a meth booklet for some time because everyone assumed that had been sorted. As for receptionists, well, they are not trained medics and therefore should neither give or interpret any blood results and, as we all know, normal varies from person to person. DD

lizzy100

I have emailed the top gastro specialist for IBD in Oxford which is the top place in the UK for the treatment of IBD and I asked him where I could find a specialist in IBD arthritis who knew about it. I expected him to give me the name of a rheummatolgoist somewhere but he said him or a person in london. They are both GI, not rheummatology.
The guidelines on management of IBD dont mention rheummatology anywhere specifically. They say it should be treated by treeating the underlying condition.
section 13 special situations.
https://www.ecco-ibd.eu/images/6_Publication/6_3_ECCO Guidelines/2010_CD_guidelines_special_situations.pdf

My first rhemmatologit seemed to know alot about it and knew of all the research papers, but then he left and the second one didn't know anything about it. He went back on the diagnosis Id got from the first guy, and wouldnt give me a rheumm nurse, wouldnt give me any way to contact anyone, just said i had to go through my gp. he wouldnt listen, he was out the door before i could ask any questions. But iv said all this before.
Im so sick of having to explain it all the whole time. and noone understands it. you often have normal bloods with this, and you have to diagnose it clinically, and all he went on about was how my bloods were normal and there was nothing 'measurable', even though id shown him lots of photos of swelling.
I saw a doc yesturday who said she could see my hands were red and swollen (wopeedoo). but i need someone who knows about this and that is this person in oxford or london.
no not all rheummatologists are rubbish, but maybe you have something more straight forward. Here they dont know about it.

dreamdaisy

I've broken my golden rule of not googling and googled IBD and arthritis. There are many articles and they make for interesting reading: the general conclusion seems to be that the associated joint pain differs from the more usual auto-immune types and generally is not as severe as that involved with RA etc. Photos of swelling don't necessarily show how much swelling is involved, how about measuring your affected joints? I did so with my knees when they were being troublesome and they were always hot to the touch.

I was initially turned away by rheumatology as being not their pigeon - now that doctor was a twerp. After a year of bouncing gently between rheumo and ortho they grudgingly accepted my application for membership and I've made the most of it. I have PsA (a sero-negative auto-immune) and the joint damage from that has led to OA which is spreading quite nicely. Quite a few on here have IBD, Crohn's and UC. DD