From what I understand CRP checks for inflammation in your blood tests, at my diagnosis in November from the consultant he wrote to say that CRP remains raised.
My MTX was increased from 15mg to 20mg in January and since then I've become more tired, giddy & feeling sickly for 4 - 5 days as opposed to feeling sick for 1 - 2 days. It was suggested by you lovely people that it could be I need to increase my folic acid intake as I'm only taking 1 x 5mg a week.
I asked at the chemist who said it would be better for me to have a blood test first to get it checked, the results came back satisfactory, I asked the receptionist what do I do now and she's arranged for a telephone call from the dr's pharmacist on Thursday. I asked the receptionist if I could please have a copy of my last blood tests in February which was sent but I can't see CRP anywhere on there and wondered if there was another medical term for CRP? I did say to the receptionist, shouldn't this be checked so we know if the inflammation is getting under control, she said to mention it during my telephone conversation Thursday.
To be honest, it's been 16 weeks since starting MTX and whilst I know it can take up to 12 weeks for any benefit, I'm not convinced there is likely to be any improvement if I haven't had any at 16 weeks, plus, the pain is just getting worse. I'm going to e-mail the consultants secretary today to see if they can advise (as at present I don't have an NHS team that I can contact).
On top of the MTX hangover, I'm waking up as if I've got a blocked nose and when I blow it, it's always blood, this has been going on for quite a few weeks now and wondered if anyone else experiences this?
Sorry for the essay
Thanks for any advice
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Garnacha
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Sometimes it can be missed off a blood panel as its not routinely part of a liver function test etc.
If they are assessing the progress of methotrexate it probably would have been useful to have had one done but if you not feeling any benefits I would try and get in contact with your rheumatologist (as you have done).
Hopefully they would have done a full blood count too which your GP would have reviewed but its worth mentioning the nose bleeds to your rhemy too.
I think of you've been on it so long and its really not working you need to flag it up with your Dr, I know with some people mtx does take a good while to work but 16 weeks is a good base at it and being in pai with RA is so hard x
Sometimes doctors alternate checking CRP (sometime called C reactive protein on lab results) and ESR (erythrocyte sedimentation rate) which are both markers for inflammation.
I’m not sure a pharmacist would really understand the issue. I think you can have quite normal folic acid levels but still benefit in terms of side effect reduction for extra. Your body excretes what it doesn’t need, so worth a try...
Thank you & Marionfromhappydays for replying, I spoke to the lady who sends out the blood forms this morning to ask if it was included on the form, she said as routine it's not as they believe once a consultant has asked for shared care that the patient is stable, I did say for an autoimmune disease that causes inflammation I thought it would be routine, she's added it to my form for my next blood tests more so when I explained how much pain I was in as she could see it made sense.
I can't see ESR on my latest blood test results either, however, it does say red blood cell distribution width high along with MCV & MCH, my previous blood test results also show them as high with the exception of the red blood cell one, I believe MCV checks for anaemia so not sure if it's high that means I could have anaemia and I've no idea what MCH means.
I believe that red blood cell count which was 3.94 10*12/L and white cell count which was 6.6 10*9/L is a full blood count? not sure if these are within normal range either.
I've sent the e-mail to the consultants secretary outlining all the problems and hopefully will hear something back sooner rather than later x
Yes these tests are part of a full blood count ( in screen shot they've mixed in you FBC with your liver function and u&e tests thats why list is long).
MCV is in relation to how big your red blood cells are, slightly raised MCV is really common, many causes 1 being low folate or B12. Methotrexate does affect folate so would be good for you chat with Dr about this. As said its a common finding x
Each lab has their own ranges for test but the results are no use unless you have those ranges. You can ask your GP or consultant for the ranges or even contact the hospital lab where the tests were done and request a copy of the ranges used.
You say you have private medical insurance from your work....why don’t you make a chronological list of all you have mentioned here & make a f2f private appointment & get everything sorted with your rheumatologist?
He will be telling your GP what to prescribe..... & GP will write the prescriptions, .... but he will expect you to go back to the Consultant if the drugs you are taking are ‘t helping you. I’m afraid GP’s aren’t usually very knowledgeable or very interested in any form of arthritis .
Your doctor’s receptionists probably know less than you do about RA drugs......& unless the lady who hands out blood forms is a nurse...she also isn’t really the person to consult.
You seem to be having difficulty getting a correct diagnosis....& asking people other that your Rheumatology Consultant just seems to be causing confusion.
They sooner you manage to get the right drugs....the better you will feel......you aren’t alone.....most of us have taken a while to get on the right drug regime..and keeping your Rheumatologist in the picture is vital...if you don’t say a drug is not helping....doctors just presume it is,& that you are doing OK.
Hi AgedCrone , with the private medical insurance we only have £800 a year for outpatients appointments / x rays / blood tests. Last year I used all this allowance up plus had to pay for 2 more x rays, 3 blood tests & a consultation at over £1000, my consultant is aware of this so has asked my GP to add me to the NHS list as he said I will likely need long term treatment that could be very expensive. When I saw the consultant last in January he said for me to give the MTX another 4 weeks, at the time I didn't think to say and what happens then (stupidly I know) and that he'd get me on shared care with my GP, since then the pain has gotten worse and I wasn't sure what to do.
Anyway, I sent an e-mail to the consultant this morning asking for advice and outlining all the issues and pain I'm having, he's not long rung me and said to stop the MTX and to make an appointment with him, I've just had confirmation of an appointment next Wednesday, he said that we'll have to look at alternative meds such as leflunomide but will hopefully know more next week.
In the meantime I've spoken again to the Drs and it appears that the letter the consultant sent asking for me to be added to the NHS list was logged and sent to the dr but apart from accepting shared care they haven't referred me to the NHS so I'll have an even longer wait to see anyone on the NHS, I'm just hoping that if I'm prescribed leflunomide it works and that I don't have to pay for private prescriptions for this too like I had to initially for the MTX.
Once you have seen the rheumatologist & he prescribes for you....l should think he will make sure you get added to his NHS Clinic & then you will have access to an NHS rheumatology nurse...but make sure you mention that when you see him,
I switched to shared care when I went on to Leflunomide & my GP refused to issue the prescription...as I remember it was about £25 a month.
I just paid up ...but when I mentioned it to my consultant’s Secretary .,she told him & he “had words” with my GP & from then he did issue the prescription.
Good luck on Wednesday...let’s hope the Leflunomide is successful for you.
I hate mtx to a point where I might just not take it . I don’t get it I was on pill form for nearly a year and the hang over was horrid and it’s something that has changed me , I remember being sick and even now certain smells and foods make me sick because of the way it made me feel . It never did anything for me so they put me on injection which is better but I still feel sick and depressed two days after taking it . I was then put on imraldi and it worked straight away and I have no side effects ( not any I know about anyway ) but I still take that horrid mtx , but why when it never worked ? It’s a horrible drug .
Aaw how horrible for you, yes I'm finding the hangover seems to go on longer & longer each week, whilst I don't feel like eating anything whilst feeling so sick I keep picking up a biscuits or banana & do find for 20 minutes or so the sick feeling stops but at this rate I'll be the size of a house 🙄 I'm hoping that leflunomide or whatever else he prescribes works. So glad you found something that actually helps albeit you still get 2 days of hangover from mtx x
As I said to Garnacha ...unlesss you tell your doctor ..after giving any drug a good try, how bad it is making you feel....he will presume it is helping you.
Blood tests are useful...but they don,t tell the whole story.
Speak to your rheumy nurse...she will ask the consultant if you need to change to something else.
My GP surgery sometimes "forget" the CRP test but if I mention it to the Rheumatologist they add a request in their letter to the GP. I've had to do this quite a few times.
I discovered there are 2 types of CRP blood test - I took part in a mental health and RA inflammation marker study by Cambridge University recently and the psychiatrist commented there are two different types, but SystemOnline and My Chart do not distinguish which one.
I have pre printed blood forms sent to me regularly from Rheummy dept as they do a blood monitoring called the DAWN program and CRP and ESR are checked each month along with the full blood counts. Also I’m on 15mg methotrexate injection weekly and take folic acid on each of the other 6 days, was told this could help with the side effects.
Thank you, that's really interesting as I would have assumed that CRP and or ESR would be regularly checked, the lady who sends out the blood test forms said to me that they don't check CRP as it's assumed you are stable when passed to shared care, why they aren't proactive instead of reactive amazes me x
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