Normal blood test results mean poor DAS28 score & no biologic. In pain and treatment ineffective

[ma73jon]

Hello

I am a new member experiencing severe problems with my NHS treatment for rheumatoid arthritis which is currently ineffective.

I am currently taking hydroxychloroquine sulphate, sulfasalazine, prednisolone, methotrexat and folic acid.

I have been taken methotrexat for four months, initially I was on 6 tablets but this was reduced to 3 due to headaches. They then increased it to four as I was getting bad joint pain but this increase made no difference to the pain and joint symptoms.

I am getting regular severe pain in my hands and wrists and shoulders and back and less severe, but still very significant pain in my knees feet and toes. I am very tired every day even if I slept well the night before.

I only ever sleep four or five hours per night at the most.

My joints often swell up and I have pictures of my wrists in a very swollen state and I am concerned this is causing permanent damage to the joints.

I am with my local NHS hospital and saw the Rheumatology nurse the other day. I showed her the pictures of my wrists badly swollen and explained that I was getting all this pain and other side effects regularly. Reading NRSA medicines leaflet it seems I should go now on a biologic as Methotrexat seems ineffective and at higher doses causes headaches and is ineffective even on 6 tablets.

They said I am one of those people who has relatively normal blood tests for rheumatoid arthritis and therefore my DAS28 score is about 44.1 even though they can see from the photos and acknowledged that I have very active rheumatoid arthritis. They said that it is frustrating for them as they cannot recommend a biologic according to NICE guidelines without a higher DAS28 score.

They said they would see if I could be transferred to Leflunomide as this could be a possible alternative to Methotrexat and might not cause headaches and will get back to me. However I am sceptical that this will help.

Can anyone please advise if there is anything I can do to improve this situation as it is clear that my current treatment is ineffective and I think it is likely that I need a biologic but NICE guidelines are not letting me access it.

I am very concerned about the situation because in the medicines leaflet it says that tight control of the condition needs to be established and this has clearly not happened in my case. I am therefore concerned that my joints are being permanently damaged by lack of effective treatment.

Finally what rights do I have in the NHS to switch hospitals? Are there rheumatology specialist hospitals in London that I could be transferred to on the NHS which have particular expertise in cases like mine.

Any help and advice would be much appreciated as I am in pain on a daily basis and very worried about long term damage to my joints.

[AgedCrone]

Hi majon73...I’m sorry you having so much difficulty in finding the right drugs ...but it does take time for some people.

You can request a referral to a different rheumatologist but you say you have only been on methotrexate for 4 months.....that drug can take a. good 6/9 months to be fully effective.... & you say your rheumatologist Is considering leflunomide instead of Mtx, that too can also take a good six months to become fully effective.

So beware of out of the frying pan. ...you are at least getting seen by a consultant rheumatologist and different drugs are being considered.That is a bonus.

The leaflets you are reading are just a guideline to the treatment you might receive .....unfortunately finding the right regime for you can only be found by continual observation by your rheumatologist.

You Mention London hospitals .....factually they are just as busy if not busier than suburban hospitals......the truth is, there are just not enough Consultant rheumatologists in the NHS to treat all of those suffering from these diseases. Realistically..... I don’t know where you live, but a long journey to see your rheumatologist is really the last thing you need when you’re in a lot of pain.

I do know it is very distressing when you are being switched from one drug to another, but it sounds as if your rheumy team are trying hard to find the right drugs for you. It’s no good taking a drug just for a couple of months ......over the years I have found six months is a good testing time to see if it is going to leap into action or if you really do need to switch.

Unfortunately treating autoimmune diseases is very much “try it and see”......& as you will read here, I’m afraid there is no 100% certain drug regime that will suit everybody.

I do hope Mtx starts to work for you......I took it very successfully for 7 years.....Or that you are successful when you try Leflunomide ... many people here are doing very well on that.

But please give the drugs you are prescribed a chance ....don’t just hanker after a Biologic drug...... your disease may not need it...... many people never need to graduate to Biologics ......so continue talking to your rheumy team......I do hope you find a drug regime that works for you very soon...but I know patience is not easy when you are in pain.

[ma73jon in reply to AgedCrone]

Hi AgedCrone,

Thanks for your very helpful reply.

I only get to see a doctor twice a year. The rest of the time I see nurses. Is this a standard service on the NHS or is this infrequent in seeing an actual doctor.

Secondly I do get phoned regularly by a rheumatology nurse but she has a strong accent that I can't understand. When I complain of being in pain she ignores this and I have just received notes where she simply lists the blood test results as being normal and does not even mention once that I am in daily pain and the drugs don't work. I am in agony and if you looked at those notes you would think the treatment was working and I was fine. Surely this is not an acceptable service? What can I do to change to another nurse?

Thanks for your help.

[AgedCrone in reply to ma73jon]

Yes it is quite normal to only see your NHS rheumatologist twice a year in fact a lot of us don’t even manage that. This year my March appointment was moved to June then moved to September and it has now been moved to October. Thankfully I am doing alright so I won’t worry them.

Really don’t fret about only being seen or spoken to by the rheumatology nurses ....they are usually much more sympathetic than the consultant because they see people more often with bad reactions to drugs ...they seem to understand how we are feeling & they will be having regular meetings with your consultant keeping him in the picture. Of course it is not ideal not to be able to see a rheumatologist more often but as I think I mentioned they just aren’t enough Rhematologist to go around ......which is why nurses take special rheumatology training to make sure that we do actually see a clinician as often as possible.

However....it is a good sign that she does tell you the results of your blood tests.

If you would like to speak to another nurse just phone the rheumatology helpline & tell the truth - that you just can’t understand nurse X ,so could they please transfer you somebody else?

I’m afraid with this disease the pain does come and go until you get settled on a regime that controls it ... .... believe me we have all spent many nights walking the house in agony.

Have you spoken to your nurse to see if you could have a steroid injection? That sometimes calms the pain down for a couple of months if you are lucky, and when you are not in pain you are not stressing and being stressed really does tend to make pain worse.

I hope you get sorted soon.

[ma73jon in reply to AgedCrone]

Hi AgedCrone,

Thanks once again for this most helpful advice. I have had a steroid injection but the effect tends to last for just a couple of weeks or so and then its back to the pain.

[charisma]

Hi ma73jon

Normal blood results are not the best indication of disease activity, especially when taking steroid drug which masks symptoms.

As soon as I was prescribed my first DMARD, I had to taper off the prednisolone for that very reason.

Sulphasalazine only lasted one month for me as it triggered a nasty reaction (blood work took three weeks to settle down) with horrible rash and an infection.

That was followed by MTX at 20mg along with hydroxychloroquine and another steroid taper for several weeks too.

RA did not settle down for six months then I was much better but did get terrible headaches with utter exhaustion from doing very little. That is the choice: suffer that kind of fatigue in between some normal activity or suffer the long term effects of active RA.

We tried eventually to lower the dose of MTX while keeping on with hydroxychloroquine too. But lowering the dose set the disease flaring.

It was 16 months of trial on those before changing to leflunomide which worked a treat after four months.

So, as you’ll notice, for most of us it is try this or that for a reasonable length of time before moving on to another DMARD.

If your RA consultant has an ultrasound machine, your hands, wrists, feet and ankles could be checked for inflammation etc at each consultation.

Since your disease appears not well controlled, you might benefit from being seen three monthly.

I think it might be a good idea to write to your Rheumatologist too, enclose pics and express your concerns. They must respond to written communications, and both sides have a record.

Best of luck!

[ma73jon in reply to charisma]

Hello Charisma,

Many thanks for this which is really useful

[ma73jon in reply to charisma]

Hi Charisma,

Normal blood results are not the best indication of disease activity, especially when taking steroid drug which masks symptoms.

As soon as I was prescribed my first DMARD, I had to taper off the prednisolone for that very reason.

If I came off prednisolone would my blood test results actually reflect the severity of the symptoms I am getting?

I am frightened of coming off prednisolone because I am worried that it would cause increased pain and inflammation. Is this likely to happen as I am already on several DMARDs

[charisma in reply to ma73jon]

The strategy is to slowly taper off eg I might be prescribed 4x5mg daily for two weeks; reduce to 3x5mg daily for two more weeks; then 2x5mg for another two weeks, and finally just 1x5mg daily for two weeks then stop if pain etc remain as low as while on higher dose.

For me, it definitely affects blood work. One month on prednisolone meant symptoms totally masked; off three weeks and inflammation and swelling were back (no DMARD either at that point) so back on another taper and started the RA meds.

We are all different but it seems that you are not getting input. The NRAS helpline might be really good for you to call too. X

[helixhelix in reply to ma73jon]

Yes, the pred will mask inflammation. It is a mediaeval system but many people have ended up coming off things like pred to be able to demonstrate active disease.

[Kerensa21]

You shouldn’t be in so much pain. I am with charisma & would put all you’ve said here in writing/email to advice line, seems to ensure action & acknowledgement.

If MTX is making you feel so ill & not helping joints surely that’s a fail? I was highly positive when diagnosed for RF & anti ccp yet apart from then bloods /inflammation have been normal, go figure? Was on MTX & hydroxy for over a year, yuk, now biologics which seem far more effective with less side effects. Wish you well with some respite soon x

[ma73jon]

Thank you both for your helpful advice

[Mmrr]

I've always found writing to be more effective than phoning. It is important to state clearly you are in pain and have swollen joints which you don't feel have been fully considered.

You should not be left in a lot of pain.

[helixhelix]

The NICE guidelines are nationwide, so all hospitals use them. But having said that some are prepared to push harder than others for patients who have tried every DMARD without success and show signs of active synovitis. But as AC says, 4 months on MTX is extremely unlikely to be considered enough by any hospital and the normal pathway is to try Leflunomide next. Where your inflammation markers raised to start with?

Why don’t you think Leflunomide will help you? Some people find it a very good drug. And since you're on such a low dose of MTX you may well find a normal dose of Lef works great. (And even 6 tablets of MTX is pretty low)

After I was diagnosed I was in a similar position to you and I had real biologic envy. I was convinced that if only I could be given biologics all would be well, but like you I never quite made the criteria. Anyway, working with my rheumy I found a balance of DMARDs that got me into remission. It took about a year to get there, as everything is pretty slow with this disease. But I stayed in remission more or less for 8 years. And the more I learnt about biologics the more I realised they aren’t a magic solution. They don't work for everyone, and they do have quite significant risks. So in the end I was in no hurry to move onto them. And when the DMARDs stopped being as effective I initially refused to change.

So I would say try to work with your rheumy team (and yes seeing nurse more than doctor is normal) and make sure you are doing everything you can to help yourself. You can ask your GP to be referred elsewhere, but you will go to the back of the queue again.

[annie0261]

Hi, sorry you are suffering, but as said previously, it takes about 6 months for mtx to really get into your system. Believe me, I was on mtx for years via tablet and injection. I was on the tablets for 5 years and sick 6 days a week but all they did was mix it up with Hydroxychloroquine, prednisone etc before they gave me the injection. It took years before I was put on biologics - only to be taken off them again! Give it time, and make sure you take your anti-inflammatory and pain killers regularly.

Good luck

[ma73jon]

Thanks so much to all of you. I can't tell you how incredibly useful it is to have the benefit of your experience that you have shared with me. I feel now that I have a much clearer view of the big picture and the various options. Thank you once again.

[Scottishlad]

I had a similar experience but was not on steroids. My blood tests kept my DAS below the 5.1 threshold for biologics. My rheumatologist thought I would benefit from them and reduced my DMARDs to see what would happen. This got me above the 5.1 mark. I have been on Cimzia now for several years and am doing well on it.

[ma73jon in reply to Scottishlad]

Thank you Scottishlad, that's very helpful

[Bleakin]

Hi majon73 - I'm in a similar situation to you in that my blood markers are with 'normal' but I have been flaring in so many joins - other than my usual wrists for so long for now and unable to do very much as I'm in so much pain. My RA started to get out of control in Dec 2018. I'm on Sulfasalazine only - having not been not successful with other DMARDS, and had courses of Prednisone, then a wrist steroid injection (I've had 3 already in RH wrist since 2015 diagnosis) but the disease continues to be active & is raging in knees, elbow and jaw, ankles and feet, & lungs for me - as I have a smokers cough without ever smoked ( though lung function normal). The tipping point I think for a biologic approval was that I had developed a small bone erosion in a MCP joint, so finally I was accessed with a month in between. I'm in London also & at a hospital where a lot of RA research is done. I'm not convinced in my case they were treating to target - I'm Seropositive with high CCP & was told I should be on 3 DMARDS at once but stumbled at the first 2. I think I have managed to keep my disease under control in the past with dietary intervention & excercise etc but peri menopause/hormones are getting the better of me now.

I agree with whoever mentioned that writing to your rheumatologist is the best course of action if you need to escalate things through helplines. Hope it goes well with you.

[ma73jon in reply to Bleakin]

Thanks very much for sharing this with me Bleakin