Hi Everyone hope you are having a pain free day, Well I had a long chat with my GP today about being Anemic and also the rest of my blood results. As you are aware I haven't had a Steroid injection for 6 weeks after having 3 since November, Things haven't moved on a lot and I am on my 12th weeks of MTX, I am feeling as if i am slowly going back to square one, Getting more pain and stiffness in joints, She feel that with the Anemia, i just need to look at my diet and feels that this could be due to MTX which is common, So she said we will just kept a eye on it for now as it isn't that bad, Well my CRP is also creeping up again and is now 12.6 after having such good results, she said this could be to do with not having the steroid injections, Also my liver function is also rising and she has arranged now for me to have a scan done, Just to rule out any other problems, I am feeling a bit defeated at the moment, but i know this has happen to a lot of people on here so i just need to stay positive, I have my appointment on the 5th March to see the occupational therapist So should get some more answers to what the next move might be for me,
Take Care XXX
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shirlthegirl
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It sounds as though you have a very thorough GP who is really looking after you well. I had 3 steroid injections during the first few months of diagnosis and I remember the feeling of being totally painfree after all the months of constant pain, it was such a relief. But it is such jolt into reality when the steroids wear off, which I presume is happening to you now, and of course MTX takes a while before you fully feel the effects. Your GP is keeping her eye on your blood results, so that is good and you just need to keep your chin up and stay positive. Take care of yourself, June xx
Oh gosh I do you how that feels, but your doc sounds really good, some are not! My GP didn't know what ARava or Humira was...couldn't believe it! When do u see the Rheumy next? Sounds like sooner rather than later would be god for you? Hugs Axx
Thanks Allanah, i have my next appointment to see the rheumy on the 15th May, but i have this appointment on the 5th, where i will also be able to see my rehumy nurse again, so i am really lucky and am in good hands, but would sooner get on a better drug than staying on MTX to long and it's not getting me back to work, if you know what i mean, But as we all know it is all down to cost, XX
Hi Shirl. I was the same as you at this stage -(CRP still sitting at 30 six 12 weeks after starting MTX) but had no steroids so no artificial sense of wellbeing from that. My liver alt was rising with each raised dose too. It did start working more or less in that I had much less pain at around 12 weeks although blood markers remained high for 9 months until I switched to injectable MTX. But with steroids you won't be able to assess how well its working so easily. All I can say is that i'm fine now mostly so it has worked well for me but it took almost a year of jiggling meds for this to happen.
Your GP sounds excellent and knowledgeable so you are obviously in good hands. The worry is your liver really I would say - and I really hope this can be kept in check so that you can stay on MTX. But if not there are less aggressive drugs to try and the anti-tnfs so please don't worry too much. Tilda x
Thanks Tilda, I know i am really lucky to have a great medical team around me, considering some of the horrible sorry i have read on here, Take Care Xx
Hi Shirl as above sounds like your in good hands. Easy to say chin up when you don't feel like it but it will improve with time take it easy. Hope you will feel better soon x
Hi Shirl, I haven't replied to blogs for quite some time because I am feeling that much better. I do understand how you feel though as I was there last summer and found it really hard to believe that anything would work, but eventually it does, stick in there. Like Tilda says it takes alot of jiggling and trial and error(less I HOPE) I am on Metojec 20mg now and my ESR recorded 1 for the first time ever, and I've had it 2-3 years on meds for 2yrs. I had scan on liver, kidneys, gall-bladder, uterus, ovaries ect; and was given a full bill of health, so I can confirm the swollen stomach is officially FAT! Hope you start to feel the difference soon and have more good days than bad, we can't make promises but eventually the right meds for you will be found. My consultant couldn't believe how cheerful I was at my last visit and said it 's because you have come out of denial, and although I can't stand the thought i have RA He's right.
Thanks Caggy, it is the positive messages that really help me to get though this,My Gp is also very positive when i see her, which really helps, she seems to always have time for me, which is so important XX
Shirl, I know 12 weeks on MTX seems a long time, but it may be it will take a while longer before you feel the effects. I started on MTX in May, and although the stiffness and tiredness went away fairly soon, it was probably a good 4/5 months before my joints really started feeling better and only in the last couple of months that I have really started to feel pretty good. So try and hang on in there.
Undiagnosed coeliac disease is a fairly big cause of unexplained anemia (from malabsorption problems). If your diet is OK and you are still anaemic, then you need to be checked for coeliac.
I strongly suggest that you ask your GP to test you for coeliac disease. Its a simple blood test first, and then if that is positive you would need to be referred to a gastroenterologist.
Thank you Earthwitch, My GP was really impressed of the amount of knowledge i have collected on this disease, and i told her i had received a lot from my friends on the NRAS, Unlike after GPs i have heard about on here, She has always encourage me to find things out, So thank you and will mention this when i see her xx
Chronic inflammation can also affect your blood count. Have you had a ferritin (iron) level done?
If the ferritin is low, you may need either more iron going in from your diet, a test for coeliac disease which affects the absorption of iron from your gut, or investigations for loss of iron from your gut (or eslewhere - heavy periods?)- e.g. an examination of your upper and lower gut by endoscopy.
If your ferritin level is normal, then something is stopping your bone marrow making the blood cells with the iron and you probably need better control of the inflammatory process.
Mine is often much lower than that, but below 10 always gets them intervening.
But you need to know WHY it's on the low side and what else might need to be done, especially as it sounds as if the inflammation is not under control from your symtpoms.
Thank you, I will diffidently find out why, As i am quite good at eating healthfully, x
Hi Shirlthegirl
As you know MTX can take some time to work, usually 3-12 weeks to get any benefit from the drug but it can take up to 6 months to get a really good idea of how well it's going to work for you. When you do see the rheumatologist next hopefully you will have a better idea of how well you are getting on with the MTX and if they don't feel the MTX is enough to control your RA on it's own they may look at adding in another DMARD in combination. It's great to hear you have so much support from your GP on other matters.
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Sooo Frustrated!!!
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