Biologics
Hi I was diagnosed with RA over 6 years ago, started on Methotrexate could not tolerate the medication, then went onto Leflunomide had bad reactions, was then tested to try Azathioprine but this was not suitable, then went onto Mycophenolate which was so bad was ill for a while on this, was then given Ceptava Mycophenolic acid which was even worse. Previously I have had steroid injections, along with x2 in my right wrist which has now cased movement issues within my thumb! I currently take Hydroxychloroquine twice a day along with pain relief, My arthritis is out of control I am in constant pain throughout the day and even worse at night, My whole body is very stiff and extremely painful neck shoulders chest hips feet. My left ankle and right wrist are swollen. I feel a mess and sometimes cry with the amount of pain I am in. I am fit and try to stretch exercise each day which does help.. oh and I have ringing in my right ear which has caused vertigo, awaiting scan appointment, medication has made me feel so ill..😪 I was searching for new meds and came across Biologics anyone had experience with this new medication good or bad thanks
Comments
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Hello @Africa66
Welcome to the online community and thank you for joining us.
So you have tried a number of medications that did not work for you including Methotrexate and Leflunomide. You have found that these types of medications have left you suffering with all types of side effects. Your arthritis is currently out of control and you cry because the pain can be so bad. You were doing some research and came across Biologics and wondered if anyone had had any success with these.
It sounds that you have really been through it. No one should be in that amount of pain where it causes them ti cry like it does with yourself.
Biologics are quite common now and you will find that a lot of members have tried various ones. They do not always work for everyone but they can also be very successful for people. I will leave some information below on them but would also strongly recommend discussing them with your consultant. Regardless of whether biologics are the right treatment for you, you do need to speak to your consultant with regards to your pain levels as what you are experiencing just isn't right.
Im sure once other members have read your post you will have lots of comments o how biologics have worked for them.
Please do let us know how you are getting on and please so keep getting involved in the community.
Take care
Anne (Moderator)
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Just started on biweekly Adalimumab injections. No issues so far. Didn't get on with methotrexate tablets as made me depressed as wasnt allowed to drink alcohol and didn't want to even try the methotrexate injections. If you read to deeply into the possible side effects you probably won't want to take any medication. Cheers Danny
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Hi @Africa66
I was put on the anti-TNF adalimumab biosimilar Amgevita at the end of July last year and by the end of September I felt it had really worked well. Prior to July I'd been in hospital 5 times in 7 months (complicated by contracting pneumonia as well) but since last July I've only had 1 overnight in hospital for observation. I don't think I could have continued with the level of pain I was in previously.
Obviously a downside of the biologic is the suppression of your immune system - particularly in these times of covid and the fact I've had pneumonia - so I'm being extra careful in what I do, where I go and who I see. I also test regularly with LFTs.
In the last few months I've had a return of a number of symptoms - I feel a bit like I've a bad flu with shoulders, hands and feet particularly aching - but it's nothing like it was and I can live with this if necessary. My rheumatologist thinks it may be caused by my system generating antibodies to the biologic - turns out this is not uncommon with anti-TNF biologics - and I'm awaiting blood tests results to confirm this. If so the rheumatologist is planning on moving me onto another biologic.
You've got to go through hoops to being prescribed biologics - the cynic in me thinks the main driver is cost - I had 3 months on sulfasalazine then 5 months on methotrexate and had to show inflammation in at least 3 joints before I was put on Amgevita.
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Your right about cost. Humira is around 10k a year on the NHS. They really don't like trying it until they have exhausted all other options. Sulphasalazine and methotrexate backed up with prescription painkillers that do nothing plus the usual lose weight, stop drinking, stop smoking line they give as a standard response. My surgeon said if they had prescribed this 10 years ago I might not have needed 2 hip replacements and 2 knee replacements by the age of 45.
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As the others have basically said, there's no magic bullet for arthritis and that includes biologics. Some things work for some people for aome time. No guarantees ut, frankly, if we were to read the potential side effects of any ,eds, we'd take no e and be in a far worse position.
As I see it we have to fine a level of pain that we can tolerate and side effects we can cope with. I hope you can find a med with which you can feel comfortable.
However, I would disabree with @Rubikscubeboy re smoking. There is lots of evidence to show that smoking can probably be a precipitating factor for RA. My authoritative site of arthritis is Johns Hopkins medical school in USA. is unsure of this but does say categorically that smokers have 'poorer outcomes"https://www.hopkinsarthritis.org/ask-the-expert/smoking-and-ra/
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Hi @Rubikscubeboy ,
I think the £10k figure was when AbbVie's Humira was the only adalimumab available. With it out of patent in the UK (it's still in patent in the US) there are now a number of biosimilars available. From what I've read on NHS pages the cost of the one I'm on (Amgevita) is £3550 per year.
But - yes the cynic in me looked at the two drugs I started on. Sulfasalazine developed in the 1940's for ulcerative colitis and methotrexate in the 1950's for leukemia. So both well out of patent and costing about 20 pence and 10 pence per tablet respectively.
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As an ex smoker I agree that smoking is bad and certainly giving up is to be encouraged. What i meant is the doctors seem to follow a tick list of treatments to use, starting with the cheapest. If I had access to biologics 10 years ago when i first heard about humira maybe I wouldn't have needed hip replacements and knee replacements and be in a wheelchair now.
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I don't actually have a problem with starting with the cheapest especially as it works for a very high proportion of people. Wouldn't it be poor mangement of public money to start with the really expensive ones?
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Yes i agree that makes sense. I guess I'm just bitter that I wasn't even offered this option until I asked about it myself 15 years after my initial diagnosis.
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I think there needs to be a view on what the patient needs rather than follow a rigid protocol driven by cost.
Before being put on biologics I had 12 steroid injections in 10 months (including during 4 months when I was also on oral steroids) which is against NHS protocols, but they did it to try to reduce my pain levels - my guess is the steroid is cheap. I was also given a large amount of opioid based painkillers which isn't good in the long term. I've read a number of NHS documents regarding the prescribing of biologics and cost appears to come well before patient wellbeing in most of them. In fact in the NHS Commissioning Framework for Biologics document the cost issue is raised in the second sentence of the first page and is the dominant theme throughout.
I think it's also turned out to be a false economy in my case. Since being put on biologics I've had a one night stay in hospital - for observation. In the 10 months previously I was in for 35 days and had 6 ambulance journeys. I've also been left with significant side effects . I think that cost would far outweigh the cost of the biologics.
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Agreed. I have had 2 hip replacements at about 15k each and waiting for 2 knee replacements I'd guess at the same price. So that's 60k just on these so far. Considering they usually last 15 years maximum I have been told to expect replacements for all by the time I'm 60 and a second replacement for all at 75 and again at 90 (depending on life expectancy). In addition I have just been approved a grant of 50K a year for Taxis for Access to Work. If I plan to work until I am 68 that's 23 years X 50K (and this was based on petrol prices before the recent price hikes). If I then add in PIP and future accessible wheelchair accommodation then I dread to think how much the government could have avoided paying.
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@Rubikscubeboy , I totally get why you feel bitter but, personally, I think 'what if' is a pointless and draining exercise. Things are as they are and we must move on.
I also think you are displaying both pessimism and optimism(!) re replacement joints. They can last much longer than you think, especially in us autoimmuners who lack the wherewithall in other joints to do a huge amount of damage. No bungee jumping for us.
My first TKR was revised when it was 27 years old. Its counterpart, acquired the same year, is still with me at just over 40 yrs. Having said that, it's totally ××××ed and won't now be revised as the much younger THR above it is making its way into my pelvis and, to replace either, would just encourage it. However, its counterpart THR is older (30yrs?) and perfectly OK. There are no set rules only averages. So it would be very hard to compare the costs of replacements. You might never need revisions or, indeed, be able to have them.
@jamieA the whole steroid thing was disgraceful. I'm sure funding comes into it in all sorts of ways. I find myself wondering if departmemts have a limited budget per annum or something.
We allegedly love our NHS but it's in a mess. It's not the best health care system in the world. And, as for Access to Work etc, these are different government departments. Yes, its the GB taxpayer that pays but the system itself is broken, I don't have an answer. I wish I did.
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Thanks for the offer - I would try medical cannabis if I needed it and read your posts with interest. I'm ok at present - Amgevita has helped greatly - though my new consultant thinks it may be waning somewhat and she has a plan to move me on to another biologic if that is so. I'm waiting on blood test results to see whether my body has started generating antibodies to Amgevita. I've only had one steroid injection in the last year since being on Amgevita and I've almost cut out taking painkillers. I'm still using capsaicin cream and Ralvo patches which I think are helping.
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Hi Anneb82
Many many thanks for feedback along with the information which has been very useful. I am still living with pain but not to extreme as it was a few weeks ago, what's changed, I had a steroid injection !! as I was told I was going through a flare up... I still have aches in my left ankle and my knees and slight stiffness in my shoulders, moving helps but then I become rather tired.. I will be seeing my Rheumatologist hopefully in a few weeks and I will be discussing Anti TNF therapy treatment. I had to stop taking hydroxychloroquine due to the side effects which I believe has caused damage to my right ear, so now my pain management are paracetamols when needed which is not ideal. I will continue to research Biologics anti TNF as I know its not suitable for everyone, I'm just at my wits end with everything - anyway thanks for the info
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Hi Jamie A
Thanks, I will keep researching as I cannot keep going on with the amount of pain I'm in, I've had a steroid injection it has helped a bit...
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Hi Jamie A
Thanks, I will keep researching as I cannot keep going on with the amount of pain I'm in, I've had a steroid injection it has helped a bit...
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