First time of posting on here but just wondering what opinions you may have as I'm at the end of my tether with seemingly no answers.
I was initially diagnosed with RA June 2013.
Started off with hydroxychloroquine. This caused major stomach issues and pain so moved onto Sulfasalzine. This dropped my wcc and neutraphils to dangerously low levels. So moved to Methotrexate tablets.
These caused what felt like ulcerations all down my throat and stomach amongst over things. This was combined with folic acid to aid my stomach. Then moved to Injected methotrexate. This initially helped my stomach a bit, but still very sharp pains in stomach and sides soon after each injection. Rheumatologist then upped the doseage! This obviously made the stomach and side pains even worse.
So to cope with this I stopped the injections for 3 weeks to try and calm down from it, which has started to relieve my stomach pains, but the joint pains are now becoming unbearable.
Saw the rheumatologist on Wednesday, went through all these details, and the answer is they've lowered the dose a bit, but methotrexate is my only option. So it's live with the side effects or live with the joint pain. Hobsons choice as they described it to me. As I don't have visible swelling to my joints I don't qualify for any other medication. As the joint pain was getting too much, tried another lower slightly lower injection last night, now today back in agony from my sides and stomach.
It's leaving me with unbearable pains in either direction. Pain killers are not enough, but obviously don't want to live on painkillers.
Is there something I'm missing here or do I simply have no other choices?
Thanks in advance for any advice.
Michael.
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michaelsminis
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That's quite a awful place to be Michael. I've been seeing my Rheumy for 4 years now and he hasn't said that's it to me yet!
So I suspect there are reasons he won't give you steroid therapy which is my normal standby.
Maybe you could ask for a second opinion or write to your Rheumy and explain that you feel there must be more they could try. Often if you put it in writing they respond differently.
Also I have I admit, and maybe you didn't, come away with what I thought they said but my version according to my hubby wasn't quite that they said!! But double check and ask for a copy of the clinic lettter( ask the rheumies secretary) and you can see what he has written and decide to ask for a second opinion or a quick reappointment.
Sorry missed that bit, I've already had 2 steroid injections. The first worked ok, I did see improvement, the 2nd time I only gained 3 days improvement from it. The rest of the time it appeared to make me feel worse from having it. So they've also ruled out further steroid injections at the moment.
I did re-question the choice they gave me and clarify is that really it? Have it or not despite what reactions it does to me. She said yes. Then cancelled my next appointment in 2 months and rescheduled it for 6 months.
Initially I was meeting with a biologics nurse who seemed enthusiastic to try different medications as my body seems sensitive to most of the typical meds. She went off to discuss with the rheumatologist then came back with the decision. Methotrexate or nothing.
Where are you Michael? I'm in Scotland, was treated in England about six years ago. If you 'fail' on DMards like you have, they then have the option of trying you on biologic medications. You need testing to avoid further complications but look up on the NRAS website. There are lots of options to follow so dont give up!
My GP pointed out that steroids were just a sticking plaster. They will help with the inflammation. It'd be interesting to know why biologics are not being considered.
Cathie it's similarly tight in Scotland to England - certainly with my health board. You have to not only have failed two DMARDs but also have a DAS28 of over 5.1 to qualify for Biologics so no swelling in joints will mean failing to meet the strict DAS criteria I am afraid.
Hi Cathie, I'm in England (Cambridgeshire). Funding seems tight here! They didn't want to do Xrays or MRI stating it wouldn't be funded. I fought to get an MRI done on my back as I had severe pain in 3 vertebrae. I was told it would need to be privately funded, however my company got involved and had another hospital from this region write to my rheumatologist stating MRI and Xrays should be done, so the MRI was conducted. However Xrays still not done as they are using one of my hand and foot which were taken approx 10 years ago when I broke them. The reason for not considering the biologics is that my das-28 score is not high enough as I don't have more than 3 visibly swollen joints. Pain from them is not enough. So they will not consider my case for funding. They were considering putting me back onto the Sulfasalazine again even though the blood results dropped too low previously and they took me off it. I am now considering private consultation to see if it can gain any advantage but don't know if this would just end up 'annoying' my rheumatologist further. I can never get any answers from my GP. If I ever go to him, he always says this is a rheumatology problem so go to them. Seems I keep getting stuck somewhere in the middle.
Hi michaelminis,
I have put a link below for you about how to go about getting a second opinion if you decide to go down that route:
Yes I think pushing for a second opinion might help, as there are other traditional DMARDS that maybe would work better for you (Gold, Lefluomide and so on) but you need to have a rheumy that you can talk to. Also, perhaps push your GP to think whether there are other things to help your stomach pain. Do you take stomach protectors? I find that I really notice if I forget it, but am on loads of drugs as well as MTX so no idea which one sparks the reaction. Also push your Gp to think harder about painrelief. Again there are loads of options that might work better for you, and you should be allowed a better choice. But whatever else, don't give up as you often have to be pretty assertive to get heard with this disease.
That's interesting you mention there are other DMARDS available. Do they have certain acceptance criteria before you can be prescribed them? The only thing I'm prescribed to help my stomach is Folic Acid daily except injection day. Are you having something different to help?
The pain killers I have are meptazinol as standard pain killers again messed my stomach up too much. Thankyou for the advice and it's nice to know you have to keep pushing. It does always feel from the GP and consultants responses that no one is listening!
Hiya Michael & welcome. It sounds as if you're struggling not really being properly cared for by your Rheumy team, though your nurse seems to understand but is restricted by your Rheumy. Some look at the whole & listen to what their patients in their care are telling them but he sounds like one that works from & treats according to bloods & testing results? I would be tempted to see if your GP would suggest you see a different Rheumy, do you have the option to see another one in your Practice? If you do I would explain as you have here that you're not happy with the treatment you're receiving, how it's affecting you, he should understand.
I've been on injectable MTX for well over 4 years now but only with the help low dose steroids, NSAID,
pain relief etc & without my mix I'm not controlled. I also start to notice by the third week if I need to stop MTX for some reason, usually antibiotics, so in no doubt it keeps me on the straight & narrow. I'm not sure what you mean by pain in your side but it sounds like you could benefit from a ppi, omeprazole or the like if you're not prescribed one, or an increase or alternative if you are. Are your blood monitoring levels pretty normal? No change in your ALK phos or ALT figures? The folic acid is prescribed to replace the folate lost by taking MTX, it's not specifically for your tum. Best not to reduce or try to control your symtoms yourself though I do understand it's tempting as things are.
I hope you can receive some help & backup from your Surgery, if not you do have the right to see another Rheumy to seek another opinion. It's awful feeling as you do, I do empathise.
I'm afraid there is only one Rheummy at our hospital. So not a lot of choice for change. Would need to get a referral to another hospital. I have heard other people get good care at Cambridge, so hopefully an option I could go with, just a little concerned I could 'rock the boat' at my current hospital. I've restarted the mtx as seriously noticing the pain build up in my joints. At least it proves it was helping!
Following advice on here regarding omeprazole, I have managed to temporarily borrow some of another family member which suffers from this and I have noticed some great improvement in my stomach over the weekend. After hanging on the phone for ages this morning, managed to get an appointment with my GP later so shall push to hopefully get prescribed omeprazole of my own.
Had some issues getting a blood test recently so a month behind :-(... Last one was the most painful experience ever. First she missed my vein, second attempt poked the needle out through the side of my vein, then tried wiggling it around to pull it back inside. Then part way through to change containers, she left the new one on the desk behind her, so whilst trying to reach it she again began wiggling the needle round in my arm like chinese torture. In the end it left an enormous welt on my arm for days. To put into context, I'm a very thin person with my veins sticking 1to2mm above my skin so not easy to miss! I have the next test on Friday, so hoping it will go better.....
That's great. I'm pleased you''ve decided to go back on MTX. Do mention to your GP about this new rash, it could be a reaction to one of your meds. I'm like you, on the slight side & fortunate enough to have prominent veins. I've found it very much depends on how regularly the nurse takes blood & why I much prefer it when the Phlebotomist does mine. She's on holiday so mine this morning was done by one of the Practice nurses & definitely more blood on the plaster let's say!
GP wasn't interested in the rash. Just said that's an arthritis related issue so talk to the rheummy. He doesn't want to know about anything that could relate to being a side effect or additional effect relating to the arthitis. He just said, don't come back to him for any future arthritis issues, talk to the rheummy.
So once again, no one to turn to other than you extremely helpful peeps on here.
I have learnt more from you guys in just a few days than I have from the GP and Rheummy in the last couple of years.
I can sort of understand why.... a busy GP with little specialist knowledge of your RD meds, but I take it no bedside manner. If it worsens do ring your Rheumy nurse, any unusual or different changes should be reported.
We can help through experience but always better to seek proper advice if anything odd occurs. You do have a contact number don't you? If not you should be able to find it online. Did he prescribe you a ppi?
Yes I have an emergency number for the Rheumy team. Have rung that one a couple of times when things have got extremely bad, but to be honest have got conflicting advice back. The last time the nurse stated she couldn't understand why they'd put me back on the mtx considering the issues I'd been having and said they would make an appointment for me to come in and see the consultant. Told me to stop taking the injections. Didn't hear any more and didn't get the appointment! The call didn't get logged against me so appeared to be lost.
The GP prescribed Omeprazole in the end, but didn't really feel it was his responsibility to and it should be done by the hospital as its relating to the arthritis.
You need to question if your Practice has signed a shared care agreement with your Rheumy Dept. If so he has to accept your Rheumys instructions, you should be able to check on line If they have a website. Do you have access to more than the one GP?
There's nothing about shared care on their website. There are 2 other practices in range, so think I will look at transferring to a different practice. Shall see if I can go and ask some pre-registration questions to see how they may handle the situation.
If you're otherwise happy with your Practice ask the Practice Manager, the receptionists wouldn't necessarily know. If they don't & it's not offered I would see about transferring to another Practice local to you that does. It specifically needs to be shared care with the Rheumy Dept at your hospital.
Ok, thankyou. I shall do some investigating. I know a surgery in a village close by does the shared care with the Rheumy Dept, however I unfortunately live approx 1 mile outside of their catchment area which is a shame.
You'll just have to move closer then! That's a shame, is there a chance they could bend the rules a tiny bit for you? Again if you asked for the Practice Manager? I did it once or twice if a prospective patient was just over the border so to speak.
That sounds like a good plan. I shall enquire. I did used to live in the village for 23 years so maybe that'll stand for something? Unfortunately I moved to the other side of town 17 years ago.
Time to change rheumy if that is all they are telling you. There are many options to try and I think he needs to reassess. Have you had any steroid therapy? It seems very short sighted to be saying there is nothing more if that is all you have tried.
At least it's not just me that thinks this way. It's nice to know I'm not barking up the wrong tree.
I've had 2 steroid injections, the first helped but the second made we worse and I only noticed an improvement for approx 2-3 days, so they've ruled out additional injections.
Hi Michael. I've been in exactly the same position as you for about 2 years now. Had failed to tolerate same three DMARDs as yourself - never had much swelling apart from hands when I was diagnosed in 2011. My rheumy says I have to meet the swelljng criteria before I qualify for Biologics so I'm currentky off everythjng - last injection MTX was 24th June. He described my RA as non erosive. It seems to be eroding my nerves rather than joints but as they are irreplaceable they don't seem to count for as much! Joints are expensive to replace and visible swelling represents greater likelihood of erosion.
Can't say it's been a picnic off DMARDs and I often wonder what would happen if my rheumy used ultrasound or MRI to scan for inflammation as some people get. But he doesn't so I'm stuck with symptomatic treatments only until synovial swelling shows up again it seems. It's a bit of a bu**er for those of us who really don't show swelling much and most of my problems are put down to wear and tear or soft tissue/ tendon inflammation presently.
Do your inflammation markers, ESR and CRP represent you well? There is an APP if you have an iPhone or iPad so you can check your own DAS28 and get a better idea of these criteria for Biologics.
Thankyou for your reply. The nurse mentioned to me last week that they believe it's targetting my tendons rather than the joints so not quite sure what symptoms I'm supposed to see from that or whether that explains the lack of swelling??
I don't have my bloods book to hand, but she mentioned the inflammation markers are highlighting there's inflammation in there as she put it. What would be typical type results?
I'll have a look for the DAS28 app and see if it's available on Android.
Sounds a familiar story to me! Having been unable to tolerate MTX and having had allergic reaction to sulphasalazine, hydroxychloroquine and gold, unstable BP leflunomide, and on steroids (for the bone marrow), I don't qualify for biologics either.
I'm now on azathioprine, which seems to be suiting me much better!
As far as I can tell, you haven't been tried on that? It's an inexpensive, old drug.
It sounds as though there are a few extra options I haven't been tried on yet. Only been tested on the first 3 so far. But as they have seen some good results with the mtx they are wanting to stick with it despite the side effects I'm experiencing.
Thankyou everyone for your responses. Very much appreciated.
I have managed to get an appointment with my GP later today, so I shall push for some kind of ppi, omeprazole hopefully.
Does anyone else experience what feels like a stabbing and crawling feeling up their back? Makes lying down to sleep difficult. I also woke up with rashes down both arms today so that was interesting and not quite sure what that was from.
I also find my feet swell up when I sit down for a while so cannot keep shoes on. Is that typical?
Mine is all in my tendons and connective tissue rather than my joints too. I'm not quite sure why this is thought to be less concerning because surely we need these tendons to work as well and this thing has been attacking my peripheral nervous system horribly too.
I have an immune mediated small fiber neuropathy that my rheumy assumed to be mild for ages and did nothing - where it looks far from mild to the neurologist and GP following MRIs, nerve conduction and a lumbar puncture. I feel my RA has morphed but as I understand it, if the diagnosis was robust to begin with then it will be back one day within a year of stopping DMARDs almost certainly. So even if you have other types of autoimmunity occurring they will generally stick to RA as the primary condition in case it returns.
I did seek a second opinion on this and RA was confirmed and no other separate pathology was the opinion I was given.
My ESR/ sed rate is always between 30 and 75 and I can predict fairly accurately what it will be by how inflammed/ stiff/ burning/ unwell I feel. I did have high immunoglobulin levels show up in my cerebral spinal fluid which means, hopefully, that my rheumy has to take the other symptoms a bit seriously. But maybe not.
You should look out for whether you are seropositive or negative in your blood test results - for rheumatoid factor and anti-CCP and ANA, Ro and La, and also how high above the normal lab ranges your ESR, CRP and PVC are and whether or not you have psoriasis and back pain etc.
Re your rashes Lupus often disguises itself as RA for many and there can be overlaps, undifferentiated connective tissue disease or Mixed CT disease. I would take photos of your rashes and keep them to show the rheumy as may very well be relevant.
If you do have psoriasis or back ache or both it may be worth reading up about spondyloarthritis's as they are closely related rheumatic conditions which cause inflammatory/ autoimmune arthritis too but less swelling often and affect the tendons and connective tissue often as much if not more than the joints. Your finger nails can be an indicator even if you don't have psoriasis. These diseases can be just as destructive/ erosive as RA and cause equal amounts of pain and if you are diagnosed with one you may also be fast tracked onto the Biologic drugs because the traditional DMARDs don't work as well for many. They also tend to affect the back more and also to affect men more than RA does. They are generally seronegative.
Ok, back from the GP regarding the Omeprazole. After attempting to describe the stomach issues I've been experiencing whilst on the mtx, he said "Well what do you want me to do about this? It's to do with the arthritis issue so will be the rheummy's responsibility. Talk to them."
In the end he has prescribed Omeprazole but 10mg strength?? Is that right as I was expecting 20mg..?
But he really couldn't understand why he had to prescribe it rather than the rheummy and was reluctant to agree to writing the prescription.
He wasn't interested in anything else, but finished with: "If I have any other symptoms or side effects which relate to the arthritis, talk to the rheummy and do not contact him."
This don't not work so well for me as the rheummy also does not listen.
My GP organises everything for me including prescriptions for DMARDs and liases with my consultants. There is a share care contract built in to the main hospital where my rheumy works and this works brilliantly for me. Even if he doesn't know about RA I feel your GP should at least be trying to find out more about the drugs you are on and help you with pain meds and the medicines that help you to tolerate your drugs. I do feel this is his job and he shouldn't have to know about RA to give you support and discuss how to proceed with your rheumy etc. But then I live in a remote part of Scotland and am lucky to have a very good GP practice although I have no choice with my rheumy at all - so it is very different.
I think if you can you should try and find another GP or a new practice perhaps. If you can do this then ask the new practice how they work with consultants and whether they have a shared care policy.
There are 2 other practices within 'range' of myself. So I will start making enquiries if they operate a 'shared care' form of contract with the hospital. I think it would make an enormous difference if the GP was to take an interest.
Do you have other doctors in the practice that you could talk to - this one sounds as he is avoiding anything to do the RA - perhaps rather frightened as he doesn't know anything about it?
It is still the job of the Gp to deal with your other problems, including that of the stomach problems.
Do you have a rheumy nurse? They are often easier to talk to about other issues.
Yes he is definitely trying to avoid it like the plague. The problem with our practice is it's difficult to get an appointment with a specific doctor. It's a free-for-all to call at 8am and hope you get some kind of appointment for the day. If not, it's call again the next morning. Cannot book in advance.
The only way of contacting the rheummy is via the helpine. This is a message service, then one of the nurses call back. Only meant for emergencies. Last time I called when having the severe stomach pains, she said I should go through the GP. But at least I did manage to convince them to see me earlier in the week, albeit still didn't get any answers or what I perceive to be useful help.
My mum's practice and GP keeps fighting to ensure there's proper communication between him and the rheummy for her. So she seems to get much better care out of the system from the GP. She has the same rheummy as myself and likewise is not impressed with the rheummys level of care. But her GP makes up the shortfall. Unfortunatly I live a couple of miles outside of the registration area for her GP practice so cannot transfer.
Michael, I'm having problems with the site, it's not showing responses & everyone's avatars are missing. I'm replying to your reply "that sounds like a good plan". I think maybe as you've lived in the village before & it's only just outside the catchment area they might just consider you eligible to join that Practice. You've nothing to lose by asking have you?
I tried calling them this morning. The receptionists initial response was "No, you are not in the catchment area, sorry."
However, not content with giving up quite that easily, I've managed to find their direct email and formulated a communication giving greater depth and reasoning behind my request to see if they'll impart a little leniency towards me.
As you say, I've got nothing to lose from trying so hopefully a little more persistance will pay off.
No, that's a standard response. I hope you're successful. Did you direct it to the Practice Manager? It is really helpful if shared care is signed, but you know that from your present GP's reaction!
Hopefully it will go ok. Fingers crossed. Yes, I directed it to the Practice Manager which will hopefully help. Teehee yes definitely have found out the importance of the shared care agreement.
I've had a quick response from the practice manager:
"I was sorry and troubled to hear of your predicament. Indeed you do fall outside our catchment area, living as you do in ********. However, I would like to flag your email to the partners for discussion and I will get back to you as soon as we have had a chance to discuss the issue in full later this week. "
Can't say fairer than that. Hopefully they will decide in my favour, but at least they are considering it.
She's done as I would have, intend to add it to the agenda to be raised at the weekly partner's meeting. I say well done her, she sounds as though she's sympathetic to your questioning why you wish to join the Practice. I hope the answer is in the positive.
Unfortunately they declined my request to join their practice so my search is on to try and find somewhere else. Bit disappointed however at least they did give my request due attention and consideration.
Following the Rheummy reducing the mtx doseage, I've been eagily awaiting the arrival of my new injections ready for Monday as I have them automatically posted to me.
Rang the pharmacy to see are they on their way as they haven't showed up online, it turns out the GP hasn't taken any notice of the Rheummy's letter to issue a lower dose so nothing has happened. Although the GP did finally prescribe the omeprazole he also didn't do something to transfer it to my electronic prescription information so its not available for repeat.
Anyway....., just had a call from the GP surgery stating my pharmacy has requested the prescription for the mtx to be completed (as I chased them), he's said no, not until an additional blood test is carried out as the dose is changing.
Ok...., so what am I missing, I'm on constant blood tests (monthly), the dose is reducing so what's the issue with prescribing a lower dose when it's been recommended from the Rheummy to do so? Now that means it'll be delayed as I have to get an additional blood test done, then wait for the prescription to be completed and receive the new injections. Somehow not convinced all that will happen by Monday! So come Monday do I take the higher mtx injection again and suffer the side effects or do I miss it and struggle with the ever increasing joint pain as I've already missed previous injections?
Hello
Medications in the DMARD group of drugs can have severe contraindications, this is why you need to have regular bloods taken. Sometimes this will need the dose to be reduced or the means you take them will be changed.
With me DMARDS do not work and all they do is effect my bloods and immune system, so now I have no choice as I am just unable to tolerate the whole group. When they find the medication that suits they generally give you an additional medications in the -TNF medications, group they work in conjunction with the DMARDS.
Generally RA is an immune system problem where the body attacks the bone and joints so the medications above reduce the damage and slow down the immune system. The problem is you can have problems and the immune system becomes not as efficient so it becomes Hobsins Choice and in some instances the the patient can run out of options. They will generally not give the -TNF without the DMARDS so they end up in my case keeping me stable with Opiate type medications and NSIDs that reduce the swelling of the effected joints although sad to say will not stop the damage I suffer from.
Depending on your condition or the joints effected they can await a remission when taking the DMARD etc, then they may give a reduction in the doses of the DMARD type medications. Of course a remission is possible in treating with NSID and pain killers with the use of an antidepressant such as Amytryptalene if nerves are trapped or effected by swelling and damage.
All I can suggest is that you talk with the Specialist and RA Nurse regarding your medications etc as I cannot tell you what is the best way forward as I am a patient myself. If you decide to go against taking these groups of drugs and they feel you are in remission they can discharge you from the RA clinic, that has happened to me as I became very ill and I just could not carry on, all I can say is that patients can in some cases be on these drugs for many years, my basic immune system now seems stronger than before as I was suffering more colds etc when I was taking them.
I do not know if this helps you, all I will say you have to consider your contraindications as there are about ten different medications that I know of in the DMARD group. They generally as mentioned earlier will not give the more expensive -TNF if they cannot use it with the former. Dmard type medications were used in the treatments of cancer type illnesses.
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