Advice,please,biologics,no funding despite qualifying

[Elliejane62]

I was approved for biologics in February this year by my consultant as I met all the criteria.It is now the end of May and I have heard nothing....my consultant doesn't know why but I have been taking oral steroids to control the flare.Consequently,my flare is under control and the hospital have intimated that I no longer qualify unless I show significant deterioration by the time of next appointment?I understood that oral steroids were to be used only as a "bridging therapy"between other treatments and am unhappy at being on them for so long?Any advice greatly appreciated.

[Luthien66]

Hi Elliejane62, I really feel for you as have experienced very similar in the past. My rheumatologist had been very reluctant to put me on biologics despite having a number of DMARDS fail. The only thing that used to give me any relief was Prednisolone. It took me a lot of fighting and tears and pain to get my rheumy to understand that actually I do need to move onto biologics. I'm now about to start my 4th biologic as the others failed.

The only thing I can suggest is to not accept what you have been told and keep fighting.

Will keep everything crossed they listen to you xx

[JGBH in reply to Luthien66]

Hi Luthien, would you mind telling me which biologics you have tried, and how long you were on each? Have been on Enbrel for over a decade now. It has worked well for me and many other people I know. However it doesn't work so well now (but I have other health issues es) so am wondering whether a different biological drug would help .... but not Benepoli because have read many posts that clearly indicate it doesn't work well enough to bring much better relief. Apparently it is the cheaper version of Enbrel and many patients are forced to have it to replace their Enbrel. Worrying...

Do hope you will find a biologic that will help you.

Please let us known how you progress with your treatment and very best wishes to you.

[Luthien66 in reply to JGBH]

Hi JGBH, so I started with Cimzia and was on that for just over 6 months which did absolutely nothing. Rheumy decided that no point continuing as RA was getting worse. Then onto Enbrel, same story and barely any impact at all. Was on that one for longer than Cim (can't remember how long....brain fog has set in...lol). Then moved onto Rituximab which pretty much worked the best. Still had some mild pain and stiffness in hands & feet but I could live with that and pretty much lead abnormal life. Think it must be around 2 years approx I've been on Rituxi but the last treatment hasn't helped like it used to. The RA started ramping up so when I saw rheumy back in March he decided no point continuing and has now moved me onto Tocilizumab. I can't start it until mid July though as am having foot op end of June. But at least I know I have it ready and waiting in my fridge.

If you are no longer getting the relief form Enbrel as you did are you going back to your rheumy to talk about changing it. There are many options out there but I find I still have to fight and push to get them to listen.

Really hoping you manage to find a better alternative. One thing I should point out is that they are also changing Rituxi to a biosimilar soon....😕

Take care xx

[JGBH in reply to Luthien66]

Luthien,

Thank you for your reply. I have read your profile and can see you have had a difficult journey too.

My first biologic drug (in 1999/2000 I think) was Infliximab infusion (Remicade) for 2 or 3 years then it stopped working so was then put on Enbrel which has worked rather well for me, recovering a quality of life I had not had for a very long time, since I developed RA, 38 years ago when I was in my late 30s and it was not diagnosed for a very long time thereafter while I was in agony and could barely function and spent nearly a year in hospital. So receiving Infliximab was a huge plus in my feeling able to have a life again... then Enbrel gave me nearly a "normal" life until a few months ago. Did see a registrar in rheumatology 2 months ago but I was not feeling too bad at the time. Unfortunately the situation has deteriorated since and my knees are very swollen and painful and I find it difficult to walk, and the tiredness is a problem. Unfortunately I have other autoimmune problems (Sjogren's being one) and I am hypothyroid (most of gland was removed in 1980: Papillary adenocarcinoma) and have been taking Levothyroxine since then. Have been feeling very unwell for past 2 1/2 to 3 years with complete exhaustion, no energy at all, fainting, neurological symptoms, tinnitus, etc.... and after fighting with my GP for a year or so I finally was prescribed B12 injections which have helped quite a bit in relieving certain symptoms but not feeling as well as I expected. I also asked to be tested for thyroid function - demanding FT4, FT3, Thyroid peroxidase as well as THS (which GPs only request! and it's pretty useless) and I have realised I do not convert inactive T4 (levothyroxine) to active T3 which is taken up by all the body cells receptors, more so necessary for the brain and the heart), so I guess not getting enough active thyroxine into my cells may prevent the biologic from working as it should. I also have an iron deficiency for which I now take an iron supplement. Also noticed that my red blood cells are produced above the normal range but their size is smaller than they should be so this means I have microcytosis... It all looks like complex pathways in my body are implicated.... so do not know what to do for the best. My GP has not been great (have seen her every month for past 3 years and it would be difficult for me to change surgery as at time I feel so ill am not able to drive further away) and I have had to push all the way... I think i need to see my rheumatologist as opposed to her registrar (not due for another appointment for a year now) and see what will be suggested if anything. I must say I am rather worried. Will PM you later.

I wish you the very best outcome for your surgery in June and the new biologic treatment thereafter. Please let us know how you progress. xx

[Jacey15 in reply to JGBH]

TSH is the best indicator of adequate thyroxine dose as it has negative feedback control. Unfortunately most GPs haven't been taught that the reference range is not normally distributed but skewed and that the majority of people have a TSH in the lower half of the reference range. There is no point measuring FT3 in patients on thyroxine as their TSH will show whether they are taking too much, too little or an adequate dose. Even in rare cases when some people have conversion of FT4 to FT3 disorder, their TSH will show whether they are on an adequate dose or not. Thyroid peroxidase (thyroid antibody) should be measured once to establish if hypothyroidism is autoimmune in nature.

[JGBH in reply to Jacey15]

Hi Jacey15,

Do you have hypothyroidism or other thyroid problems and a vast knowledge of thyroid function?

Actually the conversion rate of inactive FT4 to active FT3 is most important in insuring the body and mostly the brain and heart get enough T3, not enough T3 causes heart problems and strokes... so very important. The TSH is not that important compared to FT4 and FT3: a low TSH, a FT4 and a FT3 in their upper ranges is what matters, according to many patients who take thyroid replacement, so am somewhat confused by your statement regarding TSH.

Can you clarify? Thanks.

[Jacey15 in reply to JGBH]

Yes I have a masters degree in clinical biochemistry and review thyroid results and other hormones every day. Yes FT3 is 300 times more biologically active than FT4 but if you are on thyroxine replacement at an adequate dose your TSH will respond to this by dropping into the reference range although it can take up to 8 weeks.

[JGBH in reply to Jacey15]

Thank you for reply.

The problem is not being sure that I am on the right dose... I take 100 mcg and 75 mcg Levothyroxine on alternate days. This level was higher a few years ago. I understand that a good balance is for the ratio of T4 to t3 to be 4:1 and a very low TSH 1 or under. I also understand that people on T3 (or a mix of natural thyroid and T4) feel much better than those on F4 only, as T4 leads to, in time, heart failure and stroke.... so not an exiting prospect if one is a patient.

My latest TFT results are:

TSH: 0.3 miu/L (0.3 - 5.5)

FT4: 22.4 pmol/L (12 - 22)

FT3: 4.o pmol/L (3.1 - 6.8).

Therefore I am a poor converter of T4 to T3; T3 has increased slightly since I have been on B12 injections and am hoping it will increase further once the iron supplement I have started to take kink in.... ? My TSH was a little higher when my T3 was lower. Am concerned that is my Levothyroxine is reduced in order to bring my T4 down a little then my T3 will also be reduced.

GP said I have become hyper.... but not really possible when I do not have a thyroid gland and have always been hypo since then. I would love to know of a brilliant endo who would actually understand thyroid function/dysfunction (so many do not know, much better on diabetes) so that I would feel supported properly and hopefully feel much better on the correct dose for me and having a thyroid replacement that is safer than Levo....

Incidentally I tested negative for Thyroid Peroxidase antibody... but I understand that a Thyroglobulin antibody test should be done and would definitely clarify whether I have thyroid autoimmune disease as well... (hashimoto's), however the NHS does not do this test... so perhaps will have to do it privately.

I have been losing my hair by the handful and hair is to be found everywhere on kitchen and bathroom floors... and that's just one of the symptoms... my heart does behave oddly at times... palpitations...

Looking forward to your ideas/advise.

[Jacey15 in reply to JGBH]

Your TSH is at the lower end of the reference (normal) range. This may indicate that your thyroxine dose is borderline too high. This may be why you are experiencing palpitations. You've said your thyroid was removed due to cancer so it's not surprising that your thyroid peroxidase was negative. There is no need to measure anti thyroglobulin antibodies - it will not alter your treatment.

It is much safer to treat hypothyroidism with thyroxine than liothyronine (T3) because titrating to correct dose is easier. Your body will convert thyroxine (T4) to T3 which means you body will still have some control in keeping it in balance. Also as T4 has a longer half life, it will not cause you any great harm if you miss a dose. With T3, it has a much shorter half life and causes more problems if you miss doses and it can be very hard to work out the correct dose.

Some patients who have had thyroid cancer are deliberately treated with higher doses of thyroxine than ordinary hypothyroid patients so that their TSH is undetectable as this supresses any cancer cells. These patients have thyroglobulin measured as a tumour marker to monitor their treatment.

[linda-5502]

I have exactly the same problem am waiting to go on Humora since Feb. Have filled the firms etc and when I try to speak to the Rheumatology team might luck .I am now gijhg through a big vad glare. Good luck xxxxxxx

[James53]

Hi

Moving from DMARDS to biological takes various steps.

1. Rheumy agreeing to prescribe biological therapy based on clinical need and unsuitable previous DMARDS

2. X-ray to check lungs

3. Various bloods including TB check. This one takes 4 weeks to come back

4. Rheumy checks all of the above and if ok prescribes

5. All the paperwork goes to hospital pharmacy AND Accounts section to set up an account with external provider (health care at home or similar)

All takes time

Good luck

[Elliejane62 in reply to James53]

Thanks for replies.I had all the bloods and X-ray in February so I am wondering if it is to do with end of financial year!?

Also,can they turn me down even though I meet the criteria?

Can they insist I reapply(obviously I no longer qualify after being stuffed to the gills with prednisone)

If so,would I have grounds for legal proceedings?

I am getting really frustrated here as it's almost impossible to get through to the rheumatoid team😡

[Jacey15 in reply to Elliejane62]

I was seen in Dec and given a steroid injection then seen later and given oral steroids on a tapering dose. I was seen in Jan and as I had had 2 DAS scores a month apart that were 6.1 and 5.6 I was put forward for biologics. It didn't matter that the steroids had improved several joints. It took til the week before last for them to be delivered as the pre testing and application for funding took a long while. Can you ask for a second opinion re biologics as you had qualified for them? It seems very unfair of them to go back on the decision just because you were put on steroids.