Please read the leaflets that come with any drugs you... - NRAS

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Please read the leaflets that come with any drugs you take, biologicals especially...

sylvi profile image
43 Replies

A word of warning to all you lovely people, always read the leaflet of any drugs you take as I am suffering the side effects of Baricitinib. I didn't read them as I put my trust in my rheumy team. I rang my rheumy nurse on Christmas eve as I was feeling so unwell and she at Once to stop the Baricitinib straight away, but I still felt ill so much so I rang the 111 service and they had a dr ring me whereby he wanted to see me down there. He was very good with me, he let me ramble on and he did a thorough check sounding my chest which I have been to the drs. several times leading up to Christmas about. All the time my chest has been clear( I am asthmatic and prone to chest infections) and this dr yesterday did the same. I suppose I expect too much when a drug is taken away I expected to feel brighter straight away, but I didn't feel any better and still don't. He said it could take at least another week before it is out of my system. So my darling friends if your going to go on biologicals please please read the leaflet that comes with the drugs.xxxxx

43 Replies
rab1874 profile image
rab1874

Sorry to read that your not doing great Sylvi,good advice as we just don’t know and put our trust in the Rheumy teams,hope things improve soon xxx

Wise words. Hope you feel better soon but it takes time for drugs to leave your system so you often feel the effects for weeks (drink lots of water to flush it out)I was on hydroxychloraquine and was told there was very little chance of any problems ended up in anaphylaxis shock. When I rang my clinic the nurse told me to try again... not a chance!! I contacted my Rheumatologist who said don’t touch. A couple of weeks ago I started sulfasalazine and i reacted within hours to some of the side effects again a clinic nurse said continue 2 days later severe reaction called 111 they sent an ambulance. I knew myself things were not right but I so wanted it to work 🤷‍♀️ should have gone with my gut instinct.Took 10 days for the numbness in my tongue and my husky voice to go... and no it didn’t sound sexy 😂

sylvi profile image
sylvi in reply to

I was on both those drugs before the dr put me on Baricitinib. I will be speaking to the rheumy tomorrow to see if she can get me put back on them again.xxx

Mmrr profile image
Mmrr

Baricitinib does clear out of the body quickly, so hopefully you will pick up in a few days sylvi.

And yes everyone, it is wise to know what you are dealing with before putting it in your body !

I too was told by my GP to up my dose of sulphasalazine when I was wheezing and struggling to breath, I didn't, but called rheumatology who said stop it now.

They saw me as an emergency, I was allergic to the salicylic acid component.

I knew there was a problem with the sulphasalazine as I had read the leaflet. Unfortunately the GP hadn't.

Gjkas profile image
Gjkas in reply to Mmrr

Hi Mmr.

Sulphasalazine put me in Hospital ,had really bad problems breathing.

I've got Valvular Heart Disease,COPD, Asthma and Angina.

I ended up in Rhesus. If i had read the leaflet I wouldn't have taken them.

I'm on such a lot of medication. I wouldn't mind betting I've got Toxic Poisoning.

Can you get Toxic Poisoning from a mixture of medication.

I go to 5 different clinics. They have all been prescribed by the Consultants that run the Clinic's. I take 26 tablets every day and I am also on the Butrans Patches. 4 of those tablets are Heart Tablets.

I feel like stopping the bloody lot of them...

Mmrr profile image
Mmrr in reply to Gjkas

That is a lot of medicines. Have you had a review recently?

Gjkas profile image
Gjkas in reply to Mmrr

No I've not had any reviews on any of my medication since they attempted another Angiogram in my groin 18 months ago. They tore my main blood vessel and I had a major bleed. Caused me so many problems since then. 😰.

in reply to Gjkas

It's interesting what people have said here about SSZ. I read the leaflet before starting it and saw there was a more than 1 in 10 chance of getting tinnitus from it. I expressed unwillingness to run that risk, but was told by both the consultant and the rheumatology pharmacist that they prescribed it to lots of patients and had never had a case of tinnitus. I agreed reluctantly to give it a try.

I was taking MTX, HCQ, Prednisolone and iron tablets at the time and they wanted to start me on 4 tablets a day of SSZ. I was also concerned about interactions and told them so. The consultant agreed to start me on 1 tablet a day for a month, then 2 etc. In less than 6 weeks I had tinnitus and, despite stopping both the SSZ and then the HCQ, I still have it.

There was an article in the paper not long ago saying elderly people, often taking anything from 10 to 20 drugs at once, are being poisoned by them. If you take just 4 drugs there are 11 possible interactions. With 5 drugs there are 26 and the numbers increase dramatically with each additional drug in the mix. My point is that there is neither time nor money (nor desire?) to research all of the interactions, so the patients are put on combinations of large numbers of drugs with nobody knowing what the interactions might lead to.

Gjkas, I think it would be a good idea to have a discussion with each of the consultants prescribing your drugs and make them aware of your concerns. Maybe they need to consult each other about it and try to cut down the number. Please don't stop taking any without getting good advice (and second opinions if you wish).

I hope things improve for you. Let us know what happens.

wishbone profile image
wishbone in reply to

I had very mild tinnitus during the few years I was taking HCQ, which it may have instigated but I'm really not sure. Anyway, fairly recently I stopped taking HCQ to see if it would help ease my acid reflux. After a few months I decided to go back on it and within a couple of days my formerly mild tinnitus went absolutely nuts! :-O

How long have you stopped both meds?...I stopped taking HCQ straight away and the tinnitus gradually eased over the coming months but has never returned to its previous mild state.

I'm not familiar with SSZ, but if it can cause tinnitus like HCQ is known to then I would think that taking both together must considerably increase the odds from a 1 in 10 chance of getting tinnitus, and is a risk your consultant probably should not have taken if there were other meds you could have tried.

in reply to wishbone

Hello Wishbone,

Did you get any treatment for the tinnitus?

I was on SSZ for under 6 weeks. I stopped in mid-August. I was on HCQ for over 5 months and stopped in early September. In both cases I first reduced to one tablet from two and then stopped completely.

My consultant won't admit the drug(s) caused the tinnitus and neither will the audiologists I've seen. I've go another appointment with them next week, but I'm not expecting a lot.

I wonder if anyone else on this site has had any good results from audiology for this problem.

wishbone profile image
wishbone in reply to

Yes, I did go to my GP who prescribed a month or two's course of tablets and told me to go back if the tinnitus did not improve, which it didn't. I never bothered going back to see him though as I'd sort of give up hope. Can't recall the name of the tablets but think they are for treating Meniere's disease.

It really cheesed me off as my tinnitus had only recently started to calm down following a probable reaction to last winter's flu jab. Like your consultant regarding drugs, my GP would not admit the flu jab as even a possible cause and completely dismissed it out of hand when I asked him if it could have been as my tinnitus went crazy just two days after the jab. For the life of me I can't see how my GP could have been so certain that the flu vaccine did not affect my tinnitus, just like I can't be 100% certain that it did. That said, no one will ever convince me that it wasn't to blame either!

I hope your tinnitus calms down soon, the horrible thing that it is!

JFlay profile image
JFlay in reply to wishbone

I've had tinnitus for years wishbone pre RD. It hasn't got any worse so far with the meds (HCQ). I blame it on seeing too many loud bands in the 70's and 80's 😂

sylvi profile image
sylvi in reply to JFlay

I have had tinnitus for 24yrs thanks to a drug I was put on. I have a hearing aid now and I take drugs for it as well.xxxx

JFlay profile image
JFlay in reply to sylvi

It's a strange thing, although I have buzzing and hissing most of the time my hearing is very sharp! x

sylvi profile image
sylvi in reply to JFlay

I have good hearing in my right ear, but not my left. xxx

wishbone profile image
wishbone in reply to JFlay

Guess that can happen with too much head banging in the mosh pit! :-)

JFlay profile image
JFlay in reply to wishbone

🥴🙄😁

Agoodlife profile image
Agoodlife in reply to wishbone

Doctors can not dismiss the side effects patients get from meds. They just don’t know enough we all react differently. I wonder how much they know of the side effects and combinations of Sid effects that an additional med will cause😱

wishbone profile image
wishbone in reply to Agoodlife

Exactly the point I was trying to make in my last paragraph. If we can react differently to a single med then just think of the number of combinations each of us can react to...the mind boggles! :-O There's no way scientists can check every possible combination, so how can doctors be 100% certain what another med added to an individuals mix will do! I thought it condacending of my GP to point blank deny that the flu vaccine could exacerbate my tinnitus. All he had to say was it's possible, but I very much doubt it was to blame, or something like that.

Keep well Agl.

Mmrr profile image
Mmrr in reply to

HCQ caused dizzines and deafness with me. The deafness lasted a few hours and resolved completely by 24 hrs. My GP dismissed it. I stopped taking the HCQ and contacted the rheumatologist who acknowledged it was a rare side effect and changed me too SSZ.

Lolabridge profile image
Lolabridge

Absolutely right Sylvi!

So sorry to hear you have suffered bad side effects and hope you will soon recover.

I have had a cold for weeks which developed into a chest infection and pleurisy. I bought some echinacea to try to help my body fight it but when I read the patient information leaflet it clearly stated do not take if on any medication which suppresses the immune system. It’s a good job I read the PIL as I am on Rituximab which does just that! Thankfully I’m improving now and no longer have chest pain.

helixhelix profile image
helixhelix

Sound advice. Hope you pick up for 2020.

Pippy25 profile image
Pippy25

So sorry to hear you have not been good to say the least sylvi. Very wise words about reading the info. Hope things start to improve for you. Love your picture of the berries too. Take care

GranAmie profile image
GranAmie

Poor you! very wise warning, too. Take time, rest up and relax... time for the old musicals, maybe? What's your fave? 7 brides ? West side? Fiddler ? ... you'll soon be up and On the Town xox

Stats12 profile image
Stats12

Hope you feel better soon Sylvi xx

Interesting as I put my trust in the pharmacist

HappykindaGal profile image
HappykindaGal in reply to

I think the pharmacist is a different animal. I spoke to mine at the surgery as had some side effects with sulfasalazine. He said side effects would stop after five to six weeks and he was spot on.

sylvi profile image
sylvi in reply to HappykindaGal

I have a brilliant pharmacist and I can ask him if I have any worries. He will also tell if any over the counter I am able to take with my drugs.xxxx

in reply to sylvi

My pharmacist studied to be a GP for years before switching so I trust her. She also regularly reviews my medication and I can communicate via email directly

mhlmom profile image
mhlmom in reply to

I completely agree! I took my list of regular meds to a local pharmacist and said I was due to start a biologic and were they all ok. He ran it all through his system and told me one would conflict and highly likely to result in kidney failure. I asked the GP and they said nothing showed on their system. The reason was that biologics are prescribed by my hospital and not by the GP so don’t show up as a conflict. Always best to check.

stbernhard profile image
stbernhard

I really hope you'll be better very soon chuck. xxx

lucymead profile image
lucymead

I did the same as you Trusted my team when I went onto Benepali with Leflunomide.They had to stop Both, I have recently found out that Leflumonide can stay in your system up to 2 years. I am still suffering severe side effects 18 months on.

Ms48 profile image
Ms48

Thanks for sharing hope things look up soon. Take care

catblue1865 profile image
catblue1865

Sorry your having a rough time, hope you feel better soon xxx

charisma profile image
charisma

Lovely cotoneaster, Sylvi! Sorry you’ve had this experience with drugs, hope you soon feel better though. X

Hope you feel better soon with this Sylvi x

Cheylann profile image
Cheylann

So if you had read the leaflet would you not have taken them? All drugs have side effects and if we were put off the drug by knowing the side effects then noone would ever take any. Mostly the side effects that are listed don't affect everyone. So whlist its good to know what you are taking and what the risks are it doesn't stop most people from taking the drug they need. I prefer not to know as all possible side effects of all drugs are terrifying. You were right to trust your rheumy. He/she couldn't possibly know you would react. Hope you feel better soon

Sorry you have had such an awful time.

Problem is one can read all the information in leaflets and everyone insists that you may never get any side effects. Even when side effects are experienced they are often dismissed. All medications can have side effects. I'm not anti drugs, but I'm definately anti poly drug use. How many toxins can the body take before it finally screams a warning?

Honestly after experiencing some horrendous side effects my trust in pharmaceuticals has reached rock bottom. I think I'd rather deal with the disease than risk the possibilty of drug induced cancers, liver and kidney problems. I'm just too scared. I'm someone who now reads the leaflets and says no.

sylvi profile image
sylvi in reply to

Bunty I am still feeling rubbish, I have never had any side effects with any drugs until this time. I have had a hard time with drug.xxxx

in reply to sylvi

I'm very sorry sylvi. I think the more drugs taken the higher the risk.

Do hooe you start to feel better soon.

sylvi profile image
sylvi in reply to

Thank you Bunty. xxxx

Hands_1 profile image
Hands_1

Hi Sylvi just been reading through your life. I have been on methotrexate a few years ago . I did read the side effects of this drug but what happened one night I will never forget.

The doctors at the hospital told me to up the meth. So I did and it was on a day which I had made arrangements to go out with the girls. I was trying to put my earings in and dropped the little back thingy, as I knew what I was doing I had the queerest thing happen I thought Great I had typed about two dozen letters and never made one mistake in them. Could see the letters on the desk which I thought I had typed. Anyway later after telling the girls of my queer experience (I was arguing with myself that I could not have typed them as I was on the floor looking for my back of earing.) My hands went into terrible claw like cramps which I could not get them put straight. One of the girls had to pull my fingers back she was afraid that something was wrong and took me to hospital. The doc there thought I had had a stroke which I did not have. All in all the ruemy doc when I had told her said I had had an out of body experience and took me off the methorexate there and then.

I have looked for years to see if anything as queer had happened to anyone else, but never seen anyone saying so. i hope your on the mend this year. I have been told that I have atriel fibrillation.

Judith

sylvi profile image
sylvi in reply to Hands_1

My hubby has that due to a very slow heartbeat. At the moment he has a cardiac loop in his chest at the moment. You had a rare experience didn't you darling. Thats a frightening to say the least. I have never had one of those.xxx

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