Flare? But 'normal' CRP? Sick of feeling so sick!

Me again...... bit of an essay... 13 years RA on hydroxychloroquine, and approx 12 weeks on methotrexate/folic acid. In the last few months I've had steroid injection twice on advice from rheumatoid advice line at hospital as been feeling so rough, but gp yesterday said my crp is normal as is esr, although they did pick up a urinary infection from urine test. My joints have never looked particularly swollen, but as I've said before I feel like I'm swollen 'inside' the joints if that makes any sense... so perhaps at the moment the urinary infection is my problem, but I'm feeling like I'm never going to get to the bottom of what is wrong and how to feel better. I've been off work since last Thursday, and considering going part time as can't go on feeling like this all the time. I'm sometimes wondering if RA is correct diagnosis.... I know I was tested positive rheumatoid factor but negative ccp. I've had a rough two years with other health scares which have run me down... resulting in surgery to remove breast ducts a DVT caused by ovarian cyst rupture and removal of both ovaries... so also surgical menopause. Feel ridiculous that I'm prescribed so many medications at the moment.... hydroxychloroquine, methotrexate, folic acid, amitriptyline.. hrt, and at the moment an antibiotic plus stomach protector..... I feel like I need someone to pull my information apart and check it all out as gp practice just doesn't do this - I see someone different when ever I go and feel so rushed. Seriously considering ditching every single med to see if I'm any worse off.... but don't want to make things worse! Anyone else feel/felt like this and any advice? I'm due to see rheumatology tea, next month, and also have a bone density scan.

22 Replies

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  • I sometimes feel like that too. Currently I'm taking 24 different pills a day. I think, how on earth can all these pills be doing the right thing. No one checks with the other specialist to make sure that everything works with everything else. I'm on HRT and also have no thyroid gland... both of those are hormonal. I ask my GP every now and again whether everything works together okay. She checks and says yes. But you should also have a primary GP that you see every single time you go to the doctor, it should be the same person and if you're worried you're not getting enough time with them, then book a double appointment.

    Every time a new pill is added to my prescription, I ask the pharmacist when I should take them... with water, with food, with other medication, and he sits me down and goes through every single one of my medications to make sure I'm taking it at the right time. That is incredibly useful. So go and see your pharmacist first.

    Right now your urinary infection will be making you feel hideous so all the things you're feeling are quite normal because of that.

    Xx

  • I hated methotrexate. I was eventually diagnosed as sero -ve 're and put on sulfasalazine but reacted. Then metho and caused loads of probs wuth liver and lungs esp breathlessness which took ages 2 resolve even after coming off it tho liver still damaged. Fortunately the hydroxyquin works really well and managed to decrease dose on that as well!

  • When I started on methotrexate/folic acid I was very sick and tired for about 36 hours after the medication. This continued like this for about 8 weeks and after 12 weeks the sickness lasted for just a few hours. By working with my consultant and trying different dosages and in conjunction with hydroxychloroquine I have now got my RA under control. it has been a long journey but now I am on 250mg Naproxen a day, and no other medication. I am mobile again, yes I do have the odd day with mild pain but nothing like it was before I started Mtx. I can now monitor my own bloods as I can access my results for my GP on line. I have a supply of forms for blood test which I used to have done every month now down to 6 monthly unless I notice if things are going off track. Blood test look at the results and if things have changed a visit to the GP medication levels reviewd and off we go again. Stick with it for me my quality of life is so much better now.

  • Thank you, my first few weeks on methotrexate were fantastic, incredibly so, but I had just had a steroid injection too. I will persevere for now...

  • Doing same after sulfasalazine, not taking anymore. Feeling better but I know risk is here... point is monitoring your blood. I am taking tramadol small doses for pain and can manage my illness. Ok still bad morning stiffness but yoga is helps

  • I can relate to how you're feeling. If you get very run down it can feel as though you're in flare even if you're medically not. I had this when both my mum in law & dad in law died, both needed a lot of attention in the last months & doing that on top of living with RD just topped me off & I was running on empty, does that make sense to you? You'd had a really tough few years, I'm sorry, I think it would be unusual if it wasn't to catch up on you.

    Also if you have an infection (urinary or otherwise) your WBC value will have risen, this again can add to feeling as you do.

    It's not a competition but I'm on 21 tablets/alternate days 22 tablets daily plus MTX weekly & Butec pain relief patches, it's a lot but each is necessary to get me through each day & it does, very well indeed I'm almost human!! Both my GP & Pharmacist check my meds annually (each at 6 months) & they confirm each are required. It's par for the course, if each are necessary for your conditions. When discussing HRT one thing that made me decide I could cope without it was my GP saying she thought I was on enough for the mo so let's see how I got on without, needless to say I've not bothered but at least she recognised that I was on plenty! It's different for you I know but for you they form a necessary part of your med regime so don't beat yourself up, you'll get past this.

    I hope your DEXA scan shows you're ok & you don't need bisphosphonates adding to your repeat scripts! Hope all's needed is a calcium & Vitamin D, they're supplements not meds & don't count! x

  • Thank you.

  • Hi there, sorry you are feeling really rough. I recently had two UTIs in the hot weather after Rituximab infusions and I know it's because I got dehydrated at my infusions and also at a low after them. I felt like hell for three weeks but came back round after antibiotics. Immunosuppressants can and do make one prone to UTIs. Not everyone but in the summer it happens to me.

    I have cut down considerably on oral meds since having Rituximab. I took Panadol and Nurofen for pain for many years until the RA inflammation was under control and also Omeprazole to counter the anti inflammatories so that was quite a lot per day (12/13 tablets just to deal with the pain!) I have my main RA med by infusion and injection pen and a pain patch (Fentanyl) on my arm which I hope to be able to reduce soon. I take low dose Carbimazole for my over active thyroid (under control for some years now) and folic acid which are the only two oral things now. I hated all the oral painkillers and anti inflammatories but they were needed as my inflammation was so high in my joints. I needed to move as NMH said.

    Can you talk to your rheumatologist about injecting your Mtx if it makes you feel very unwell taking the tablets? I changed once I was on the highest/full dose Mtx as I felt too tired and nauseous, and the injections had/have very little side effect re me feeling sick and tired. Many people notice they feel much better injecting Mtx. Worth considering.

    I hope you can get to the bottom of all of this as you've had such a lot going on. I think you need your rheumy to point you in the right direction here as I'm sorry out go doesn't seem able to help you. 😕 I agree that your pharmacist could help out with the medications. Mine recommended some alternative painkillers in the past and suggested other helpful things.

    Vitamin D drops have made me feel much better too over the last year or so. My D levels were at rock bottom. Hard to say if that has given me more energy or the power of Rituximab! Both I think. Good luck with the Dexa. My last one was good and bone density fine (sadly joints not! )

    Understand very well the impact of parents passing away and stress etc. My Mum got Alzheimer's and went into a residential although she was physically fit and lovely with Alzheimer's .. Not nasty or withdrawn, but sadly passed away 4 years later in March 2015 and all that followed with probate and nasty SIL executor and selling her house and maintaining and cleaning it .. I was worn out and listless. Exhausted mentally from being harassed daily by SIL. Mentally and physically shattered. RA meds failed me too 2014 in the midst of all of it and I went downhill so it's hard to come back when there's a lot going on and a complex pharmacology! Also menopause came right in the middle of this too oh joy! My doc said resist HRT due to the complex pharmacology. Still have symptoms but they are nothing like as bad when it's not summer. I think when there is such a lot happening it's hard to imagine ever feeling better but you do get there. You are right to question your medication but please don't stop the RA/Mtx ones on your own without discussion with your rheumy. At 12 weeks of Mtx it seems it is working very well to control your inflammation tests although you've had some steroid shots too which bring your ESR/CRP down a lot. To stop Mtx without discussion with your rheumy would set you back after taking it for 12 weeks. Hope it's early November you see the rheumy. Can you speak to your rheumy nurse on the helpline about how you feel? If you have a helpline.

    Are your joints stiff from too much sitting at work maybe? Is this why they feel inflamed when there is no raised ESR or CRP? Would you benefit from hospital physio or hydro sessions? Worth an ask also when you see your rheumy. Good luck. x

  • Thanks for reply. I won't change anything until I've seen rheumy and had bone density scan. I haven't had bereavement to deal with, that was someone else, but it sounds like you've had a tough time of it, I'm sorry, I do however have an agressive mother who is very needy and demanding of my mental and physical energy, fortunately this is balanced by an incredible husband and adult daughter :D. Workwise there's no danger of sitting still - I'm an early years practitioner, meaning I'm keeping up with 4 year olds all day.... most days my pedometer shows over 15000 steps at work.... I'm thinking of reducing my days. Recently I've been too exhausted to even make myself a cup of tea after getting home from work, can't go on like that! I was hoping the Mxt was working well as initially I was fine. Just this week I was told by rheumy nurse to increase to 20mg (orally) and think this could account for the nausea. I will go back to 15 until I see them again I think. Thanks for your thoughts

  • Sorry Girli, I wasn't referring to you re the bereavement. Just saying how these awful things impact and all add up when you're battling getting better. It sounds like your Mum is hard going. 😣 It sounds also like you've such a hectic job and yes when you get up to 20/25mgs Mtx you do feel it. I hope you can get round it maybe by asking if you can split the dose? I know some people here have done that to combat nausea. I hope you have a good meeting with your rheumy and you start to feel less tired. You're doing very well with your mobility and how many steps you take. I couldn't do anything like that in my early days of taking Mtx. I think for most people would find what you at doing to be tiring!

  • Hi girlie1969 everytime I get a urine infection ear throat or a virus I get what I call a flare up if my symptoms of RA. My fingers on both hands look like fat sausages and right side swollen wrist ankle elbow. I like you have normal ESR CRP levels but then on some occasions I don't particularly get flare ups and my CRP ESR are very high. In my case the joints aren't affected it's the enthesis the bit of ligament or tendon that connects to bone that is what inflamed it affects my right side more !!! I'm lucky I have a good GP maybe you should go to another GP surgery ????

    Take care ,

    Let me know how you get on !!!

  • Thank you, that's interesting that your crp and esr are like mine! I had no urine infection symptoms as far as I was aware, they just did a urine test routinely I think. I think I'm going to try and book a double appointment with a gp that I trust to go through things properly, it's so tricky though as they only release appointments two weeks ahead so it's a bit of a lottery trying to phone at the right time to get one sorted out

  • girli1969 you have just about summed up my journey since I was diagnosed with RA in 2011. My Rheumatoid factor wasn't raised but CRP and ESR were. I have been on and off treatments including steroids,sulphasalizine,MTX biologics. You summed up how I feel. I go to nurse or consultant. I feel like shit and have usually been suffering for 4-6 weeks and just trying to manage. They tell me my results are normal and my joints don't look swollen therefore they do not want to give steroid injection. This is the one thing that helps me and actually makes me feel how I felt before the illness. I grieve for the old me. I have managed to convince them to give me steroid injection 2-3 times a year .

  • I've had steroid twice now in the last 3 months, prior to that I'd only ever had it once. When I had it in July (at same time as starting methotrexate) it was like a miracle.... unfortunately that only lasted 3 weeks....

  • Are you having steroid injection into specific problem areas or are you having a general injection into large muscle. I have had different steroids and the one that works best for me is Kenalog into the buttock and within hours I can feel the benefit and all pain and stiffness goes. It usually starts to return after 8 weeks or so. The only benefit I notice from MTX is that it seems to enhance the effect of the steroid and keeps it working longer...

  • It was depo-medrome, 120mg into buttock for whole body relief

  • Ah yes, I,ve had that and like you, I found it wore of quickly. I have Kenalog 80mg and usually lasts 6-8 weeks before symptons start again...

  • Hi girli1969,

    I too wonder if my diagnosis is Rheumatoid?? Because even though my RA factor was High, and the test said positive, other results were in the normal range. I was on Methotrexate and recently decided to go off all of my Medication to see if my body would feel any

    different , I can honestly say I do not feel any different, probably more sick with the medication. Although, I am very stiff and sore, I continue to figure this out and look for answers.praying for answers to our questions!

  • Hi! I have not read all the replies below but certainly sympathise.

    My recent flare was in spite of MTX and hydtoxychloroquine, and did not show up as increased inflammatory markers in blood tests.

    However, it is how you feel that is more indicative of active flare; and my joints were obviously swollen and painful, and I felt exactly as I had before the drugs achieved suppression.

    So, do what you know will benefit you. Be kind to yourself and rest when needed.

    Advice on meds is needed before chucking them all out, tempting though it is at times!

    Hope you find a way to feel better soon. :-)

  • I have suffered with RA for 16 years but I suppose I have been lucky, started with Sulphsalazine till it caused problems then Diclofenic till it scarred my kidneys then 20 mg Methotrexate followed a day later with Folic Acid and I feel it did nothing but cause me breathing problems eventually dropped to 7.5 mg a week along the way I had cortison injections in both shoulders results were amazing and no pain and I also had a steroid injection which also had an amazing effect could have climbed Everest but when it wore off I was in a bad way but because reuhmatoligy denied the injection had anything to do with my problem with no energy spent two weeks in hospital before it was discovered that my blood pressure was low when I was on my feet. I was wrongly diagnosed with Pulminary Fibrosis and the RA clinic stopped my Methatrexate straight away the improvement to my breathing and health in general was fantastic and I was discharged from the RA clinic then on the 10 May 2015 I developed shingles and I am still suffering the pain from the shingles over 2 years later and also it seemed to kick off my RA so it was back on Methetrexate it and also Predosoline which I have been on since April 2016 5 mg a day, this time I stopped the Methotrexate myself due to breathing difficulties. I keep getting told that there are new medications for RA by other Doctors I have seen in hospital but they never seem to get prescribed. I was recently at the respiratory clinic as I had had a blood clot and am now on Abixaban for the rest of my days to thin my blood and a great Doctor there Dr.Jones arranged another appointment for Reuhmatology as I am afraid my Surgery is a waste of space. This has been a long winded way of trying to answer your question but I would suggest you stay away from Methotrexate, I think I spelt it right this time, but as they say one mans meat is another mans poison and my favourite saying since contracting RA is old age doesn't come on its own, sorry about some of the spelling I have asked Doctors who thinks up these medical names. I was given 50 mg Amitriptyline for shingles and I could not handle that and when I told the Doctor she in her wisdom put it in a repeat prescription. I was given Ciprofloxacin for a urine infection and it left me with nerve damage in my toes, fingers and back irreparable damage I was then given Gabapeton but the Doctor never told me you need to come of it gradually and I suffered bad withdrawal systems loosing appetite weight and thought I was going to meet my maker, judging by your name I am guessing that you are about 31 years younger than me I am 79 and I may not have been much help to you but I do hope things improve for you and you may just have learnt something of what to avoid

  • Reading these so very terrible stories about abundant use of meds without any real analysis of the patients health as a whole, makes one really angry. Patients are too often pushed into a vicious circle of meds, their adverse reactions and new meds and so on. We as patients really need to educate ourselves and insist on understanding the effect of meds in our individual situation and always look for ways to support our bodies healthy functions.

    There are a lot of nontoxic things we can do to control RA, that will lessen the toxic effects of meds and give us strength to fight on. The blind belief in meds exclusively will in the end most likely have a bad outcome.:(

  • You are certainly not alone with these feelings. During the two years I have followed this forum to learn how RA is diagnosed and treated I have often read these sad reports where meds are not working, where diagnoses are made too swiftly, in my opinion, and aggressive toxic meds started when the disease picture is still unclear, where blind belief in meds have not made the situation better but in fact worse.

    Perhaps it would be an idea to check your other possible underlying dysfunctions and imbalances and get these sorted out first. You said you were on hrt. Is it fixing your hormonal imbalance, that probably was causing your earlier problems? What about your thyroid function?Have you tried dietary modifications? Why were you perscribed mtx? I understand that you have been in pain for a long time but still it seems unclear what is causing it. You've had a lot of stress too which I am sure has made and is making the situation harder.

    I think you need a doc that can see you as a whole person not just as a bunch of eventual RA symptoms. The way you describe you have been taken care of,is really very sad and no one suffering from this stressful and often so painful disesease should ever be treated. I hope you will get help soon that really helps.xx Simba

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