Effects of long term use of Prednisolone and Methotrexate

peterwicks

My wife Sylvia has suffered RA for over 20 years now and her main medication has been 12.5mg of Methotrexate once a week and 7.5mg of Prednisolone on a daily basis.Not for the fist time Sylvia has been experiencing strange mood swings which include wanting to commit suicide and harming herself, plus floods of tears and just recently mouth ulcers and loss of memory.After contacting our local GP and presenting him with all her symptoms he dismissed the fact that it could be either of the two medications she is taking...even after he had been shown the medications side effects leaflet which states everything I have said in black and white and suggested that she should seek the service of a Psychiatrist!...As a retired research technician I find these so called doctors of medicine a danger to the public because of thier closed mind attitude to evidence that stares them in the face....your views would be welcomed

frogmorton

Oh Peter you must be so worried!!

Are you going to go back to the GP and ask for some help?

People often mention mouth ulcers and mood swings too.....is there maybe another GP you could see at your practise?? or plan B the rheumatological team?

Her symptoms can't be ignored if she feels suicidal! Do you feel ok to cope with all this?? There is a helpline number here you can ring (at the top of this page) and of course the samaritans 24 hours a day (08457 909090).

Love

Toni xxx

stickywicket

Hello Peter and a warm welcome from me, too.

I agree with frogmorton. You must be very worried indeed and, if your wife is suicidal I would urge her to ring Samaritans at any time. Both you and she might also find it useful to have a word with our own Helpline people.

As a fellow RA patient, of over 50 years, I would also suggest that your wife rings her rheumatology helpline. (She will have a number if she is on methotrexate.) If her symptoms are caused by the medication, it is her rheumatologist who needs to deal with it, not the GP. GPs can only prescribe methotrexate as directed by the rheumatologist. I have never, personally, had problems with methotrexate but mouth ulcers are quite common on it and can often be dealt with by increasing the folic acid (though only as directed by the rheumatology team).

If Sylvia has been on prednisolone for 20 years that’s quite a long time for it and maybe you could ask the rheumatologist for this to be reviewed.

Many people with arthritis get understandably depressed and that sometimes requires extra medication. However, suicidal thoughts, self-harm and memory loss are a different matter and require urgent attention so I would suggest Samaritans asap and Sylvia’s Rheumatology Helpline when it re-opens on Monday.

I hope you can get some answers and some peace of mind both for Sylvia and yourself. Please let us know the outcome.

Buka

Hi Peter,

I can only agree with all the advice you have been given so far.

I take the same medication and I believe you are right in what you are saying although obviously all medication affects different people to different degrees. I take 15mg of methotrexate and dont have mouth ulcers now but I did when I was on 17.5mg and they were really painful. I am also taking 5mg prednisolone daily and although I dont have suicidal thoughts I do have very gloomy days and find myself getting very emotional all the time. I am reduced to tears very easily these days and I am sure that long term use of steroids is part of the problem and I have only been on them for six months. Things that used to be minor now become major and my partner says it is quite unsettling living with me at the moment. I can imagine it is tough on you and you probably feel quite helpless and at a loss to know how to make her feel better. There are professionals out there who can help and I hope you find them soon. They aren't all like the GP with the closed mind thank goodness.

I hope you both get the help and support you need quickly and I wish you both well.

Buka

rockchick

Hi Peter

Sadly I'm not surprised by your GP's attitude. It's disgraceful though, especially, as you point out, that depression and mood swings are listed as possible side effects of Prednisolone.

I'm sorry your wife is suffering like this, and agree that she needs to contact her rheumatology team ASAP. What I do want to stress though, and you should be aware of this already, is that your wife must NOT suddenly stop taking her prednisolone. After taking it for so long, stopping it suddenly could be quite dangerous. It is best tapered very slowly, under careful medical supervision. If it was your wife's rheumatologist who originally prescribed the Methotrexate and Prednisolone, then bypass the GP, and contact rheumatology as soon as possible.

DebbieT

Hi Peter,

I'm so sorry that your very real & valid concerns have been dismissed out of hand, it's disgusting of the GP!!

All the advice uve been given on here sounds spot on but I will tell you about my husband & hopefully that will shore up your resolve to be listened too & ensure you demand the help Sylvia needs. Please remember that as her carer you MUST look after yourself too so please seek help for yourself as & wen you need it!! (((hugs)))

My husband suffers from very severe Restless Leg Syndrome, its actually full body involvement. It's infuriating, disturbs sleep badly & was making him quite poorly, it even affected how his heart beat!! So he was referred to see a neurologist for help & hopefully better medication than sleeping meds.

It turns out it is treated with Parkinsons disease meds, they had some awful side effects like Tardive Dyskanisias (sp?), he was seeing things that weren't there. With 4 youngish children coping with all of this was very stressful & it all felt just wrong to me somehow. I ended up doing my own research as they kept adding in new meds & tweaked dosages etc They seemed to be doing more harm than good!!

That all happened in 2001/2 & by September 2002 he couldn't hold his site manager job down any longer & he was put on incapacity benefits. It was an extremely frightening thing to see happen to a physically fit man in his early 30's.

It made me research more & more. I started to find exactly wot id feared seemed to be happening!! His meds were ALL contraindicating with each other & his side effects were very obvious!!

I printed loads of info out & took with us to see the head of neurology. I was told to sit against the wall & shut up, I want your husband to talk for himself!! I was STUNNED!! It was the 1st time we'd even met him & all id done was raise, very politely, my concerns. Hubbys memory was AWFUL by this time & I had gotten used to filling his answers in for him verbally wen he gave me the 'deer in headlights' look!!

At the end of the farcical session the Top dog diagnosed him with 'Shell shock'!!! Well it hadn't been called that for years, its PTSD!! He sent us to see a psychiatrist. She was appalled & gave us a surprisingly clean bill of mental health.

Eventually pain had become a massive problem, he could barely walk, kept falling & breaking bones, he couldn't be left unsurpervised so our GP sent him to a pain clinic to see if they could figure it all out & help him ....
They did. He has PERMANENT nerve end damage to his legs & bladder caused by all of the contraindicated meds!!!

Please, please, please don't let them fob you off, belittle your expert opinion coz you ARE the daily expert of your wife & MAKE them listen & act!!

I will live with the guilt of letting myself be bullied out of wot I believed was happening & being afraid of offending the man in charge of his care

So here we are in 2013 with 4 adult children, 1 Grandson & our 2nd Grandchild on the way & at almost 43 & 45 years old we're now both pretty much bed bound because of no real fault of our own
(I have OA, PsA, Plaque Psoriasis & Fibromyalgia)

Don't give in to them Peter!! I'm here to offer any support I can.

Take care.x

trepolpen

Hi Peter , welcome to the forum , have had RA since mid 90s & been on Methotrexate most that time on 25mg/week , the mouth ulcers goes with it & partly why we all take folic acid & if she is having problems higher folic acid should sort it but she needs to talk to her Rheumatology nurse to get it increased

almost all of us with long term RA suffer some sort of depression , mostly mild & take something like Amitriptyline from thier GP , always get side effects from the steriods & they can make the depression worse , only problem is she will get a big RA flare if she came off them + you came just stop them anyway

the advice above sounds good , talk to your Rheumy nurse/consultaant & ask for reveiw of her medication , lot of new drugs out there & try another GP about her problems with depression

peterwicks

May I say "thank you all" for this fantastic response to my cries of help,my wife said thank you also.Sylvia was a patient of Hinchingbrooke Hospital Cambridge,which was taken over by the Circle Group of private heath care and has been a total disaster in regards to her RA care being she has not seen her Rheumatologist for over a year!!!.We are not blaming her RA doctor, but we do blame this GREEDY private useless profit making company.We have changed her Hospital to The Lister in Stevenage and her first visit is on Tuesday 23/4/2013 and I will let you know how we fare.The comments about family GP's is very valid..they are not experts in the field of RA and can be very dismissive to something they know very little about and over the years the carer is better informed than any GP on the health and well being of their loved ones...

DebbieT

The very best of luck for some decent care & understanding when you see the rheumatologist.

Please pop on & update us wen you can :-) Thanks.x

daffy2

Not sure if it's relevant to your wife, but a couple of friends and my sister have found that the menopause upset ongoing conditions and/or their medications.
I do hope you can make some progress soon, it is so hard when your concerns are dismissed out of hand.

frogmorton

Best of luck from me too and please do say hello to Sylvia

Please do let us know how you get on on Tuesday

Love

Toni xx