I had my Rheumatology appointment on Tuesday. I went in well prepared with everything written down (a lot had happened since my last review) and my husband came with me.
Saw yet another locum consultant. She did listen to me and was good when I burst into tears about not being able to walk and the awful 3 month flare I've had coming off a big dose of steroids/being right down to 7.5mg Methotrexate for 7 weeks. But I have had a consultation of two different halves which has left me feeling confused 🤔
First she told me the stiffness in my feet and hands was from inflammation. She heard the little joints in the top of my foot crack when she manipulated them, inflammation she said.
She was very excited to examine my elbows and told me I had enthesitis, inflammation of the tendon at the insertion point and I had 'tennis elbow'. Inflammation she said.
What about my achillies tendons I asked? They're so stiff when I get up in the mornings I can't get my heels down on the floor (I'm wearing Dorsiwedge boots in bed to keep tendons stretched). Any walking or physio exercises make it worse. I've been like this for 10 months now, except for 3 weeks at Xmas when I was on steroids. As soon as the inflammation went down I could do physio without making things worse. There is some swelling around the back of the heel and I have pulling pains on the heel bone. Not inflammatory cause, mechanical she said.
If I've got enthesitis (inflammation) at both elbows and shoulders too, surely it's the cause of my achillies pain? She told me to rub ibroprofen gel on my elbows, ive been rubbing it on the achillies and back of heel and it's taking some of the swelling down and things feel a tiny bit better.
Then she looked my blood test results, ESR now down to its lowest ever 9 (highest I've ever been during a really bad flare is 29) and declared I had no inflammation! So now I feel really confused. I almost feel like she thought I was making it all up! A previous consultant said I was a 'flat liner' , had inflammation but it never showed well in blood tests.
On a plus point, I now have a June appointment (referral in January!) at podiatry for orthotics. I also pressed for feet X-rays which I've not had for years despite problems. Having a foot ultrasound too to look for inflammation.
I notice she's changed my diagnosis on blood test forms to IA instead of RA. I've been gong to the same Rheumatology dept for 11 years. getting fed up with being told something different by each Rheumatologist (this is my third locum in a row) and not making much headway.
Sorry for the rant 😯 Know many of you are in a much worse situation and thankfully my flare and joints are much better than a few months ago thanks to Methotrexate.
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FionaHerts
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Looking at the number of reports here from 'flatliners' who don't manifest inflammation in the way that they 'ought' (ESR, CRP) I wonder if there will eventually be other biomarkers - or if the term "inflammation" as measured by those will in the long run be consigned to history in a similar way to that in which "fever" is no longer a disease but a symptom.
And that doesn't even address the people who have similar erosions to inflammatory arthritis but are seronegative for everything and might/not show joint swelling/heat etc..
It sometimes feels as if it's possible that clinically useful information is being overlooked by discounting the reports of patients' experiences in favour of judgments made from proxies such as bloodwork.
Last year I saw a different locum consultant who told me straight out I had full blown RA and why wasn't I on any medication after 11 years? She was the one who termed me a 'flat liner' and said that just because blood tests aren't showing bad inflammation, it doesn't mean your not suffering! Think she's left now, unfortunately.
There are too many doctors who just look at the latest blood test result. They don't even look at the trends. One Consultant actually told me if I had pain, take a paracetamol!!! (I wasn't on any RD medication). I was gobsmacked. Left in tears. It leaves you feeling disbelieved. We don't need that.
Worse than that, it could lead to permanent damage. A friend who has aggressive RA with very high inflammatory markers was told by the same consult there was nothing wrong with her wrist and no X-rays were necessary. Three years down the line she needed a wrist fusion, all the small bones were so eroded they were taken out and replaced with a metal bar. We are the ones who know our bodies best and know when something isn't right!
I am one of those people who show no inflammation on my blood work-ESR completely normal-always. I am RF-, CCP+ and ANA+. MRI shows terrible inflammation, including the back of my achilles and the bursa there, and 5 other places when there was no injury. Swelling in both feet and hands, along with heat. I'm sorry you are having to be strung along with conflicting information. Have you said "I'm confused and don't understand-you've just told me I have these areas of inflammation, but then tell me I don't when you see a number on a page. I know what I feel, and it's pain, so could you please explain to me why suddenly I now have something different?". You have a right to know their thinking and reasoning. I hope you find relief soon.
Yes, that's exactly what I should have said! If I'd been on the ball id have asked her that, but I had been very tearful and wasn't thinking straight. I had been in there a while and the consultant was clearly wrapping it up. My husband was checking my list to make sure I'd got all the things out of the appointment I wanted (x rays, u/s, orthotics referral), which I had. I suppose what I really wanted is for her to tell me why I can't walk and what can be done about it.
Really sorry to hear about your achillies problems Wowserbowzer as well as Rheumatoid feet and hand problems. Very similar to mine. I also started out as RF-ve, ANA +, CCP-, but my RF has become positive and more so as the years have gone by.
I had achillies tendonitis and plantar fasciitis in one leg last summer. Physiotherapist refereed me to a consultant orthopaedic surgeon who confirmed the condition. However, an ultrasound showed a healthy achillies tendon surrounded by a mas of 'boggy' inflamed tissue and I was referred back to my Rheumatologist. Unfortunately, because the u/s was done privately my NHS consultant doesn't have the results so only has what I'm telling her to go on. I'm going to try and get hold of the report, because I've got exactly the same symptoms in both legs now. Steroids helped me get better last time (briefly).
Have you found any treatment that's helped your achillies symptoms?
Can you press for an MRI on your Achilles rather than an X-ray? X-rays are good for bones but an MRI is better for tendons and soft tissues. The cost of the MRI may be an issue but you've had this now for 10 months and can't walk.
I have the exact same blood results as wozerbozer and never have elevated ESR or CRP but an MRI in hands and feet revealed synovitis. Perhaps because you've previously had an ESR of 29 they see a 9 and believe you're under control.
I presented with tendon issues in both my hands, feet and ankles but they have mostly resolved with my RA medication. I also had orthotics made for me which helped too.
the consultant is also sending me for an ultrasound of my feet which I think should show up the inflammation. I know an MRI would be better, but I don't think they even have one at my hospital, which is basically closed and runs day ops and a few outpatients clinics only.
I'm going to see what I hear about when the u/s will be. I have thought about paying for one privately to get the results sooner, but my next Rheumatology appointment isn't until September and you cannot be seen earlier (even if you're having the worst flare ever and in a lot of pain), so I doubt having U/s results any earlier would get me anywhere.
P.s. Forgot to say, I've got an orthotics appointment in June (consultant forgot to do referral forms when I was last seen in January!) Hoping that will help.
Very pleased to hear your achillies is improving, also gives me hope!
Even though you may not be a runner, and this article explains a lot of what happens with overuse injuries (which isn't what's going on with you) it still has a lot of good information about trama to the tendon and perhaps can help you put together some questions to ask your doctor.
It may also be of no use to you whatsoever, but I thought I'd pass it on to you just the same.
Oh my goodness! That's the best article I've read about achillies problems!
When I had the ultrasound last year, the doctor (he was from the Royal Orthopedic Hospital) said the tendon itself was healthy, it was the sheath around it that was swollen . He explained the tendon had to move backwards and forwards inside the sheath and because this was inflamed it was catching and there was a lot of friction. That's explained in the article -paratendinitis!
Very interesting that steroid treatment can make it worse 😱. I was just coming off 40mg Prednisone when both my tendons got bad. Started a walk fine, ended with stiffness in feet and half way up my calves and that was the start of it, followed swiftly by a huge RA flare.
It's reassuring that I've got the right exercises to do. They've been really difficult, especially heel raisers, when my feet were set in stone with a bad RA flare for a couple of months. I'm able to do some of the exercises now, but any walking and the exercises are still making the tendons worse.
The orthopaedic consultant recommended the shock wave therapy last summer, but I couldn't go ahead with it at that time as you need to be clear of any steroids for 3 months prior. Apparently it's very painful and takes 6 months to get the desired effect.
This is a really useful article, thank you so much! I'm printing it to go in my Rheumatology file!
That is what I have the Paratendinitis! (plus fluid and swelling in several other tendons in my feet and ankles. I was given exercises and I was already wearing a "boot" to keep my middle foot immobilized as the tendons were all jacked up. Having the right shoes helps. Also the Methotrexate seems to be helping. I was dx in late January with RA and had taken 5 weeks worth when I got horrible bronchitis first week in April and had to stop for 2 weeks. The second week off of MTX the pain, swelling, etc came roaring back. Now my dose was upped to 5 per week and then will go to 6. I wasn't completely sure it was helping until I went off! I now have a love/hate relationship with MTX. lol The MRI is what convinced my ortho to send me to a rheumy because she didn't know what to do with me, and said it had to be systemic to have that many areas with no cause of injury. My rheumy has even said "we have the proof that you have damage from RA by looking at your MRI, even when your inflammation numbers are normal". It made a difference.
I feel the same with Methotrexate. Started in Sept last year at 12mg and by early December it was helping joint pains and stiffness and also helping my achillies. Unfortunately I had some severe mtx side effects and had to come down to the minimum 7.5mg dose for 7 weeks before building up one extra tablet a month.
Initially I felt fantastic, like me again, but then I started the worst and longest flare I've ever had and I'm only just coming out of it! I'd also been put on a whopping 40mg Prednisone dose for 3 weeks over Xmas and I think coming off that didn't help, my inflammation was completely out of control. I've now worked up to 15mg (6 tablets).
Pleased to hear the mtx is helping you Wowzerbowzer. What is the boot you are wearing to help your foot? I've got a pair of blue Dorsiwedge boots, a sort of soft moon boot, to wear at night that keep my feet at 90 degrees of my leg. Is that the sort of thing you've got? I just bought mine online after the orthopaedic consultant said it might help when I saw him last summer. Only trouble is immobilising my feet means I wake up with it set solid most days.
I went to a running shop yesterday and explained my problem. Chap there was really helpful. I've bought a pair of trainers with really good arch support and deep heel cups. I've got a high arch and think not having proper support in some shoes causes me problems - I was wearing some old trainers without good arch support when I did the walk on New Year's Day and started all this off again. Other than that all I can wear is Fit Flops, I have an old pair of their boots and they are great.
Best of luck. It's so nice reading your post (and others) and realising I'm not alone, others have the same!
The boot was an orthopedic boot that they give you when you break your leg or have surgery. I didn't wear it at night. My arches are collapsing due to the damage at my navicular joint. I find that a wedge type shoe works best with a platform or my Hoka One One athletic shoes. I can't wear any type of flat shoe or go barefoot. I can still wear my Dansko shoes for work. It's been a grieving process with having to give up all my neat flat and heeled shoes. I have found the thicker Yellowbox flip flops are comfy.
My rheumy just gave me something called Rheumate to try. It's a prescription medical food grade pill that is supposed to help with MTX induced side effects. It will take the place of my daily folic acid. It has B12, L-methylfolate, and curcumin.
Yes, it is nice to know we are not alone or some crackpot weirdo.
Gosh arch collapse and joint damage don't sound good.
I haven't done well in my new trainers today with very little walking. Worst I've been for a while, which is annoying as we go on holiday on Monday!
Know what you mean about grieving for your nice shoes. I've been wearing Fit Flop boots and sandals only for 11 years now after my first ever flare.
Rheumatoid pills sound interesting. I've been ok on Folic Acid, take 5mg a day except mtx day. Would love to take some B vits as I'm sure I need them (always feel better if I have a Berocca tablet), but most b vits have Folic Acid in them, and not sure I'm allowed the extra.
Hi I had the shock wave therapy 6 years ago after suffering terrible pain from plantar fasciitis for over 12 months. You are right, the procedure is quite painful and I think I had about 5-6 sessions but I don't think it is anything that most of us with all our problems can't cope with. The radiographer who performed the therapy said it works much better if you can tolerate the highest pulse rate of the wave therapy. They turn it up gradually so that you can cope. It only lasts for about 5-10 minutes on each foot. I can honestly say that I haven't had any problems since the treatment until about 2 months ago and it has started to rear its ugly self again with the usual discomfort and Achilles pain. I will not hesitate asking my GP to refer me for the shock wave therapy again. (So it can't be that bad😀)
I hope it is sorted promptly for you as it is quite debilitating and disheartening to be in such discomfort and pain as soon as your feet hit the floor. Good luck with it.
That's really good to hear that the shock wave therapy worked for you. I was offered it last summer for one achillies (private treatment), but was unable to go ahead because of the 3 months off steroids prior rule.
Did you have stiffness and inflammation around the achillies tendon with your plantar fasciitis?
Do you really take 5mg or folic acid a day (except MTX day) while you are only on 7.5 mg of MTX?
If so are they giving you that much folic acid because of side effects? From what I understand 5mg/6xweek is quite high and would most definitely effect the efficacy of MTX. Perhaps you mean 1 mg/6xwk
Yes, I take one 5mg Folic Acid tablet every day except MTX day. This is what was originally prescribed by the consultant plus 12.5 mg a week MTX.
I have queried the Folic Acid dose with the Rheumatology Nurse and also another consultant as I thought it was high, but was told it's common practice in their clinics (West Herts). I've been seen by another consultant and a registrar since, both have written prescriptions for Folic Acid for me and they haven't queried it.
I started MTX on 12.5mg Mtx initially, then after 3 months had bad side effects (sharp stabbing pains in temple like someone had stuck a javelin into my head, up to 13 times a day). Temporal arteritis was suspected by my GP, but my Rheumatologist said it was MTX side effects and moved me down to the minimal 7.5mg dose. I had 7 weeks at 7.5mg (&40 mg Prednisone, plus a temporal artery biopsy), then increased by one MTX pill every four weeks.
Working back up slowly has worked and I'm now on 15mg MTX without the head pains, but I had the most horrendous flare on the lowest dose as I came off the steroids and I'm only just coming out of it now.
I'm just being transferred to my GP for blood monitoring and he will be writing my prescriptions from now on. He monitors all the blood tests for MTX patients at the practice, so I'll ask him what Folic Acid dose others are on.
Thanks for your helpful response, has made me think about this again. I certainly don't want to be taking my more MTx than necessary!
That's interesting Fiona as I started on 10 mg injections with 5mg the day after MTX day. When we upped the MTX to 12.5 I stayed at 5mg/1xwk.We upped it again to 15 mg and I was getting a bit nauseous so my doctor told me I could take 5mg twice a week but he said he didn't want me to go any higher than as it can reduce the efficacy of MTX. That's a total of 10 mg per week.
When I asked about folic acid many months ago on this forum I was told from others that in the U.K. they usually use 1 mg tablets. I was baffled at first thinking they were prescribed 5mg/6x per week.
At any rate, it certainly won't hurt to ask your gp as that may be another reason you've not felt as if your RA has been under control or it may very well be normal practice where you live and all is well.
Also, just to throw this out there, when people don't do well with the side effects of MTX they're often given an option to switch to Leflunomide (Arava) but you probably already know this.
I'm wondering whether the consultant prescribed the high dose of Folic Acid as I've had side effects on Hydroxychloroquine (was unlucky and got deposits of chloroquine on the macula in both retinas which has damaged my eyesight) and I had to come off sulphasalazine as it made me very unwell and started having problems speaking and became very withdrawn.
I was told there was only one other drug that I could be prescribed (presumably as my inflammation markers are low) if MTx didn't work, Lefluomide, but that could make my blood pressure very high (I have a family history of heart disease, so that didn't sound like a good option).
So I've worked really hard to stay on MTX despite side effects and my initial 12.5mg dose worked well for me until Christmas and I was symptom free (on 5mg Folic 6x week). Unfortunately then I had the temporal arteritis scare and came down to 7.5mg and lot she of steroids and things are not quite back on track yet.
I spent the initial 5 months working through the side effects on MTX with bad brain fog, but this has lifted and I only get two days a week like that now after my weekly MTX dose. I have had a lot of tummy problems in recent weeks though and several weeks of constant nausea (relieved by increasing my Lansoprazole dose and by eating small amounts of something bland). Had a gastroscopy last week, all fine. Locum Rheumatologist I saw last week said it wasn't the MTX, but can't find any other likely cause. gastroenterologist said could be IBS, although this seems odd.
I will definitely raise the Folic Acid dose with my GP.
I see, so Methotrexate wasn't your first DMARD? Are you taking pills or injections?
Nausea is a known side effect of MTX and even more so with pills but I'm sure your doctor knows best whats going on especially after you described your symptoms to him and his clinical evaluation of you.
The reasons for your high dose of folic acid makes more sense knowing you have issues tolerating DMARDS.
At least you will go armed with questions that your gp can help you sort through.
Thank you Lucy11. I'm on MTX tablets. The consultant says I can try injections instead (but then wrote prescription for tablets), so I'll see how I go when I reduce my Lansoprazole.
The week before my tummy pains started I took Naproxen for 5 days (was in a bad way with joint pain and stiffness) and I wonder whether that caused my stomach issues. I was taking Lansoprazole at the time, but only half the max dose.
Hi, I have psoriatic arthritis(had the arthritis without the psoriasis for 17 years and just this last year started with psoriasis.) Always had negative blood markers except for right at the start. I was diagnosed by isotope bone scan which showed up all the inflammation even though my bloods where normal and of course symptoms. My main symptom is enthesitis and I get it in every joint possible but the Achilles and my elbows are my main areas.
Like someone else said I do think some of us need a different bio marker which they don't have yet. I really would love to transmit my pain and symptoms across to some of these docs that go on blood tests as the be all and end all and have set ideas about how these diseases behave !!!.
They would soon change their tune.
It shouldn't have to be a battle to be believed and get the right treatment but that is often how it is. Thank god we have each other. In the early days I wasn't in a support group and at times thought it was me that was going mad . How could I have all this pain,stiffness and fatigue that had completely changed my life but have doctors,people that where supposed to help me treating me like nothing was wrong .
I am lucky now to have a great specialist nurse who on the whole gets it but through my own experience and various groups realise the lottery that finding the right rheumi is. All the best and gentle hugs x
Im so pleased you have now found a good specialist nurse. I agree, it's pot luck and having someone who understands, it makes such a difference.
I've hardly ever seen the same Rheumatologist twice and they all contradict each other, it's so confusing. I even had one consultant a few years ago who looked at my blood test results (I was on no medication and only having one bad flare a year, but not properly well in between flares) and he said I didn't have rA and ' if you have pain, take a paracetamol'! In a very condescending tone!
I am awaiting results of foot X-rays and should be getting a foot ultrasound to look for inflammation not visible to the eye. If I find I've now got bone erosions, or feel I'm still not getting the right treatment, I may ask my gp to refer to another hospital for a second opinion.
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