CRP and meds

[Mybirthday1975]

hi all!

I’ve just been to the hospital for my weekly dose of metratrexate 15 ml (injection)my last CRP reading was 12..today it’s back up to 17 😟 I mentioned to the hospital that I have stopped the sulfazalizine due to side effects and that I was waiting for my next appointment with the Rheumatologist to discuss an upped dose of metratrexate and another DMARD to replace the sulfazalizine! My question is do you usually had two treatments together for them to work or can metratrexate be used on its own?

And why is my CRP up and down??🤔

[Amnesiac3637]

Methotrexate can be used alone or in combination with other drugs or other drug/ drugs can be given without methotrexate. It all depends entirely on your condition, your rheumatologist’s preferences as to what he/she prescribes and how far your disease has progressed or not.

Your CRP can go up and down like a yo-yo until you’re stabilised and within short parameters they won’t worry too much so between 12 and 17 is neither here nor there unless it continues to go up and stays up. Take advice only from your team where the drugs are concerned, they know about you and how you’re functioning and ask as many questions as you can at each visit so you’re informed and in control. Best of luck and hope you’re stable and well soon.

[Mybirthday1975 in reply to Amnesiac3637]

Thank you for replying just wish it was under control 😟

[Button_]

Hi, I was on Methotrexate for years and it was great in terms of controlling the disease. They can increase your dose or lower it depending how you are and the only other drug I was on at the time alongside it was an anti-inflammatory. So hopefully it starts to work well for you, if not already! : ) I am currently taking Sulfasalazine - do you mind me asking what side effects you experienced? I seem to have really vivid dreams but that could just be me generally!! Hope you get sorted very soon!

[Mybirthday1975 in reply to Button_]

Hi thanks for replying!

I had been taking sulfazalizine for over 6months but every day more or less I was waking up really tired need to sleep loads..Headache..my skin was really pale I was still eating but not fancying much I just felt unwell not myself at all it was a horrible yuk feeling I can’t explain it really.I got to the point I dreaded getting up not being able to plan much as I didn’t know how I would feel.I felt I had to exclude this med to see if it was this that was causing these unpleasant side effects I thought it’s this or metratrexate or RA itself,so I’ve been off this nearly two weeks and sure enough them horrible feelings are gone.As for the dreams you mentioned I can’t say I had that but I do on the metratrexate.I’ve heard sulfazalizine is a good med but just not for me.😀

[Button_ in reply to Mybirthday1975]

It sounds like you did the right thing coming off the sulf in that case; glad you've got rid of those horrid feelings. A lot of it is trial and error isn't it. Good luck with getting your meds sorted and hope the Methotrexate continues to help.

[Mybirthday1975 in reply to Button_]

Can I ask are you still on metratrexate?

[Button_ in reply to Mybirthday1975]

I'm not anymore as came off as thinking about trying to start a family. I was on it for 20+ years. I do miss how well it worked for my joints as been a crazy year or so not being on it, joints have been bit of a nightmare. Currently on amgevita but doesn't seem to compare to metho. Waiting for a face to face appointment at the min to discuss further options. Keep me posted how you get on anyway! Hope it works it's wonders for you. 🙂

[Mybirthday1975 in reply to Button_]

Hi thanks for replying!😀

Yeah I was on the metratrexate tablets but I couldn’t tolerate them so I’m now on 15 ml injection but hopefully the consultant will up the dose again as I feel it’s working as I’m not tired anymore but my joints are still quite painful and it’s moving around from different joints!did you feel it improved your fatigue?and I always feel hot the next day after the metratrexate not a temperature just warm we’re as others are saying it’s freezing 🥶 did you find this ?

[Button_ in reply to Mybirthday1975]

Hi, yeah I hated the tablets - think I was ok for a few weeks and then really struggled. Just the sight/thought of them made me feel sick. Injections so much better! Maybe 20ml injections will be the perfect dose for you, fingers crossed! I can't remember feeling specifically warm but perhaps a bit as I often felt sickly/yukky for a day or two after taking it and often could only eat really dry/plain foods. Also felt like I had excess saliva in my mouth which was unpleasant. But the benefits on the whole made up for it! 🌞

[Mybirthday1975 in reply to Button_]

Yeah that’s exactly how I felt when I thought or looked at the tablets!!maybe the feeling hot could have something to do with not having a period since last August (perimenopause)😞yeah maybe 20ml will do the trick 🤞

[helixhelix]

it is variable as depends on your reactions. Some are fine with one, but at one point I was on 4!

Must be a pain going to the hospitals each week, won’t they let you do it yourself at home? So much easier!

[Mybirthday1975 in reply to helixhelix]

Hi! So i would have been doing it myself by now but every time the consultant ups the dose I have to get it done at the hospital for 6 wks to monitor my bloods!

[Mybirthday1975 in reply to Mybirthday1975]

But yeah it will be better when I can do it myself 👍

[girli1111 in reply to Mybirthday1975]

How bizarre, are you in the UK? I have never ever had my injection at the hospital or at doctors surgery

[Mybirthday1975 in reply to girli1111]

Hi yeah I’m in the UK they said it’s to monitor me and my bloods to make sure it’s right for me..so each time they up it they monitor it.so for instance I’m now on 15ml and my 6wks of monitoring is nearly up so they will train me/show me how to did it myself!but because I feel the metratrexate is working but not to it’s full potential I feel I need it upped so will have to do another 6wks at the hospital 😟

[girli1111 in reply to Mybirthday1975]

changes are usually monitored by regular blood tests, but it’s unusual for them to be doing the weekly injections too. Life will be much easier when you are doing your own for sure!

[Mybirthday1975 in reply to girli1111]

Thanks for replying!i yeah I will be easier I will do it right before bed I think😃

[girli1111 in reply to Mybirthday1975]

that’s what I do. Just have a tissue handy, doesn’t usually bleed but occasionally you can catch a blood vessel and I’ve bled onto freshly washed under sheet more than once 🤦‍♀️! The metoject pens are very easy to use, you’ll be fine

[Mybirthday1975 in reply to girli1111]

Where do you inject?the Nurses usually do it in the tops of my arms but I imagine that would be difficult for me to do on myself 🤔

[Boxerlady in reply to Mybirthday1975]

Is it a pen rather than a syringe? I use a pen and was told either outer thighs or tummy which I think is usual; never heard of arms but then I've never heard of having them done by a nurse apart from when being shown how....I use thighs as more fat there for me! 😂

I just have regular blood tests without going to the hospital.

[Mybirthday1975 in reply to Boxerlady]

Thank you for replying and that sounds pretty straightforward 👍I’m a little unsure why I have them done for me maybe because I’m classed as newly diagnosed

[girli1111 in reply to Mybirthday1975]

upper thigh for me

[wilbertjellyfish]

I think lots of people with RA have slightly out of normal CRP. My understanding is it reflects inflammation from 24hrs before so there is a bit of a delay.If I'm doing ok my "normal" is between 20 and 30. It was checked last week 72, I'm surprised it's as high as I was feeling good. It's very easy to focus on one thing but you have to look at generally how you are feeling and getting on.

How are your joints? Are you still stiff in mornings?

[ruth_p]

Your CRP can also go up and down depending if you have a cold or your body is fighting one. So a difference of 5 could be caused by that or your RA.

[BoneyC]

I've taken MTX for over 40 years (dx. 1971 in childhood) and also currently take HCQ in combination. It's my understanding that the more aggressively RA is managed in the earlier years, with combinations of DMARDS, the less joint damage in years to come. Once joint damage has occurred, no combination of DMARD drugs will fix the damage.

[Maxim1]

good morning, they always add additional drugs in to control the Ra, this is not explained at the start but I don’t know of anyone that has had Ra under control with mtx only. It is the starting drug as it’s also the cheapest. My CRP fluctuates too and I keep a record of general health against the reading, eg was I ill, stressed or something else to help me understand but i only started that this last year. Not sure if that will help or not but you can perhaps sense my anger at the standard MTX prescription route.

[GinnyE in reply to Maxim1]

I've had RA five years, pur on fast track early diagnosis route, and I've only ever been given methotrexate. Told I've been in remission for two or three years now. Didn't realise I'd eventually need something else. Time will tell I suppose.

[Vivienham]

I've been on methotrexate for about 5 years (with folic acid on other days) plus hydroxychloroquine, which I understand is a DMARD. So I suppose having two medications is normal. As others have said here, using the metoject pen is very straightforward (I only use the tops of my legs) and it enables me to have a higher dose than when I took it orally. With the latter I had a lot of mouth ulcers but these have almost disappeared using the pen. My CRP has been very varied, ranging from over 100 to under 10 but no-one seems concerned about that! Good luck with your rheumatologist.