Too Much Medication?

jamieA

As I've said in other posts I joined the Nuffield Health Joint Pain programme ands we're now in our 4th week. There is one other person with PsA on the course and another with RA - the rest of the group have OA. This is the first time I've spoken face to face with someone with inflammatory arthritis since I was diagnosed in 2020. I've found out that the PsA and RA sufferers are taking a biologic only and that when they were moved onto biologics their other drugs sulfasalazine/hydroxychloroquine/MTX were all stopped. I know everyone is different and treatments will vary but I wondered how common that is - I'm still prescribed 3gms of sulfasalazine a day and 10mgs of MTX weekly as well as my biologic. I've previously been told that the drugs work in conjunction and so they are still prescribed but the sulfasalazine didn't work on it's own and neither did the sulfasalazine/MTX combination.

I'd really like to get my medication reduced if I can - due to this and a heart issue I'm presently taking 130 pills a week and a bi-weekly biologic injection. I saw a cardiologist in late November and he did not want me to reduce the heart drugs.

My rheumatologist is on long term sickleave and I'm seeing a locum rheumatologist in mid February.

So I just wondered if many others on biologics are still taking their initial first and second line treatments.

stickywicket

I've never had biologics but know people who are on them and have been reading posts on here for...well...far too long.

I think it really is an individual thing and probably depends on the aggression of the disease plus, maybe, the reason for biologics. (If the reason was side-effects from the previous meds I can see they would be stopped.) Like you, I'm all for taking as few meds as possible. I have, over many years, got my methotrexate down from 22.5mgs to 10mgs but, when i tried to reduce further (always with the rheumatologist's consent) mine got a bit alarmed about my continually high inflammatory levels so I went back to 10mgs and have stayed there.

I will never attempt to reduce the cocktail of meds I was put on after the TIA as they work brilliantly and strokes are a favourite method of dying in my Dad's family.

Pain relief, I see as under my control so I take very little.

It's difficult if you're seeing a locum as I'd imagine they would be rather reluctant to rock a boat which has taken some time to reach less stormy waters. But you could ask the question you've asked us and maybe suggest removing one med or even just slightly lowering one dose as a start.

Please let's know how it goes.

Trish9556

Hi @jamieA

My Arthritis is nowhere near as severe as yours and I am lucky not to be in many drugs as you.

However, when I was 19 I was on 98 pills a wwek including a lot if Phenobarbitone for my Epilepsy and what they did to me was scary to the point that I almost died and I was in hospital for six weeks. I now query every pill or potion that I'm prescribed and constantly review long term ones with them. Especially when new ones are added so I know where you're coming from.

I would encourage you to ask the question with you drs and consultants. There may be a combination of different drugs that work better that would mean you might take few pills.

Sometimes Drs don't look at the whole picture and just keep adding to the pile.

Love n hugs

Trish xx

jamieA

Hi @stickywicket and @Trish9556

Thanks for the replies.

I wouldn't arbitrarily reduce my medication but I would like to reduce it if possible. I've gone from 1 5mg pill a day - the lowest level - for high blood pressure (I was 1 point above the recommended blood pressure level) before the PsA to this - I'm now taking 9 different drugs.

For my PsA I now take 52 tablets a week and one bi-weekly biologic injection. For my AF and tachycardia I take 49 tablets weekly. I also take 7 prescribed vitamin D tablets weekly.

I saw my cardiologist in November and he changed my blood thinner in December as I had been experiencing cold hands and feet which was a reported issue with the thinner I was on. He said he was reluctant to decrease my heart medication as I'm 5 times more likely to have a stroke after experiencing AF and tachycardia. I'm now experiencing severe headaches and increased tinnitus and my GP's answer was to prescribe me gabapentin - 21 tablets a week. He didn't think the headaches were anything to do with the blood thinner change even though they started 9 days after the change.

I managed to get a number for the cardiologists secretary and called and explained my headaches and their timing. I got a call back from her this afternoon to tell me the cardiologist is reverting my prescription to the original blood thinner as he thinks that's a logical thing to do. So hopefully that'll cure the headaches and I can put up with the cold hands and feet by adding extra layers - last summer I was wearing thermal socks and gloves in July!

@Trish9556 I totally agree that doctors don't seem to look at the whole picture. I still think the heart issue occured due either to the PsA or the drugs I take for it. The first cardiologist I saw I asked him to consider if the AF and tachycardia were caused by the PsA and asked him to talk to the rheumatologist. He said that the NHS didn't work like that and he was only considering the heart issues. The fact that I took a tachycardia episode 4 months after they put me on all these heart drugs but then when they reduced the MTX by half after that episode I've had 15 months free of any heart issues doesn't seem to register with them. There are plenty of medical papers online linking MTX to heart issues.

Trish9556

Hi @jamieA

I think in that case you will have to speak to each Dr/consultant separately and ask the question of each one. Eg if you take 10 of pill A at a lower strength X times a day is there a higher strength one that you could take one of three times a day.

You're the only one that sees the whole picture so maybe research each drug and see what strengths they come in and see if it could be managed that way if that makes sense?

Does your GP surgery have a pharmacist that could look at it for you? Alternatively could you have a chat with your local one who does your prescriptions? Are there any that you take that have different names but do the same thing?

I think the NHS generally does a brilliant job but sometimes they mess up a bit. I feel for you and would pick them up by the scruff of their necks and tell them to sort it out.

There must be better options/alternatives

Love n hugs

Trish xx

stickywicket

I think @Trish9556 makes a gooď point about asking a pharmacist.

If it's any consolation some biologics can actually protect against heart disease. I find this article, fŕom a reliable source, quite interesting https://creakyjoints.org/about-arthritis/psoriatic-arthritis/psa-symptoms/psoriatic-arthritis-heart-disease/

As for cold hands and feet, Mr SW has the same pŕoblem. I found him some socks which really are warm (but exceptionally thick) and our dil found him some gloves which have pouches for theiŕ electronically heated inserts. They stay warm foŕ hours. He loves them.

jamieA

Hi @Trish9556

I had the conversation with the cardiologist in November when I saw him and he's not prepared to agree to decrease my heart drugs. I've not seen my rheumatology consultant - the last time I saw a consultant was my old one in June 2021. I saw a doctor working for my new consultant last February and had a telephone consultation in June 2022.

I'll raise the question with the rheumatology locum I'm seeing in two weeks though I don't hold out much hope of a change from a locum.

I had just assumed that my prescription of 1st, 2nd and 3rd line drugs was kind of the norm for inflammatory arthritis. Then finding that the first two people with IMID that I've met face to face only take biologics and no 1st and 2nd line drugs made me pose the question here.

I'm afraid I've found my GP surgery a bit useless since I first fell ill. I did ask last year for a review of my medication but the doctor I spoke to on a telephone consultation said she didn't have time to do that. That was after I'd been diagnosed with anaemia and finding I'd been taking omeprazole (which can be the cause of anaemia) for 7 months when I didn't need to. I get the impression they don't want to get involved in my treatment as it's now complex. GP's surgeries here have catchment areas based on postcodes and the other surgery covering my postcode is regarded as poor.

Hi @stickywicket

That's a really interesting article.

I'd just really like to reduce my drug intake.

Trish9556

Hi @jamieA

I think you're being very badly treated. Speak to pharmacist who does your prescriptions at your chemist. That's part of their job, looking after people like us.

Take care

Trish xx

PeterJ

For those that are interested here is the link to the free Nuffield Health Programme

https://www.nuffieldhealth.com/about-us/our-impact/healthy-life/joint-pain-programme

Liza

Hi,

I have been on biologics' for 22 years. 3 years ago I was put on MTX injection alongside and ended in hospital with double pneumonia. I was very unwell.