Augustas

[Augustus-6]

I have had r/a for 15 years in the beginning i had the odd steroid shot then for years i relied on over the counter meds as i was terrified of dmards and biologics. Two years ago i had so much shoulder pain i went to doctor for a sho but he gave me pred tables ive been hooked on them ever since. I take 5 mg per day 15mg for a couple of days if i have flare i cant get to 4.5mg without a flair. Has anyone else been on pred long term and has ra damaged their heart as im told it causes heart disease. Thank u

[Hidden]

Oh I do worry when I hear of folk depending all the time on steroids when there are more suitable meds available for RA. Please read the risks of developing Osteoporosis on steroids. Please consider trying Dmards or Biologics, they are much safer. xxxx

[Augustus-6 in reply to Hidden]

My experience is different as ive explained often. I was diagnosed with severe ra along with two much younger people 15 years ago.They took demards biologics just about everything i had a few shots of steroids the first couple of years then parcetanol and occasional ibuprofen for 10 years. Two years ago i was in agony and couldnt drive went fo a shot they had run out abd gave me pred tabs i take 5mg and cant get off them. The two ladys got more sick one went blind and they both died a few years ago. I have a friend who has lupus and she has been on 5 mg pred for 10years and when she asked her doc if she could have a baby he said ofcourse many do and she has a healthy child now. Pred is over 50 years old we know the side effects modern drugs needs blood work often and monitoring i manage pred on my own. My bones are good had a scan a few months ago and when the flares are settled im very mobile for my age. I know someone who works for drug companies he shares my fears of so much of the unknown and thinks im doing the best hes seen. I have heart disease but so did all my family so it could be the ra or maybe not. I once met a very old lady when i was first diagnosed she was 95 and one of a twin she begged me not to take any of these drugs as her twin died of them years before they bth had ra. So no need to be so worried the stress for me to take them and all the monitoring ie i hate needles isnt good either. Its difficult in this country to see a doctor i rang for app and they had none as 4 weeks is as far ahead as they go and they were fully booked. U cant get accurate info u ask pharmacist and he says ask doc which u simply cant in uk. Ive lived in various eu countries and its easy just walk in ans see a doctor anywhere any time but not here. Thankyou for your help

[Hidden in reply to Augustus-6]

I'm glad you're bones are good. Mine aren't unfortunately. I've had RA for 30 years, and now, after being put on very high doses of steroids, I have Osteoporosis with 4 fractures in my spine, and can hardly walk. May I wish you all the best wishes.

[Augustus-6 in reply to Hidden]

Oh thats terrible were u put on steroids recently and that caused the osteporosis? What have u taken all these years as they had very little options years ago. Im terrified of all thses drugs ra is a terrible thing i do sympathise its so dreadful and scary. I had a dexta can and they said my bones were good but i never asked if they looked at my spine.

[donnaheads in reply to Hidden]

Why do you say biologics are much safer? l had not heard of them before, so l Google them and have side effects that can be serious. l suffer from Osteoarthritis and would like to not take any drugs at all. But this seems almost impossible, as pain on a daily basis and trying to go to work. l am just asking because l think l might help myself by getting as much information as l can.

[Hidden in reply to donnaheads]

Biological are not used for Osteoarthritis Donna. I take Leflunomide and Methotrexate for RA, I also have Vasculitis and part of the treatment is very high doses of Prednislone. I also have Rituximab infusions. Biological are only used fo RA, PSA, and other autoimmune diseases.

[Augustus-6 in reply to Hidden]

What is vasculitis Poem?? Ive got ra but for 15 years ive refused all these modern drugs i used to take ibuprofen with paracentamol and just suffer. Two years ago i tried 5 mg pred and im told i must come off it as its soooo bad, but then u take it as does a girl i know with lupus shes been on 5 mg for 10 years and had a healthy baby recently. I had a bone scan and that was ok. I find it very difficult to reduce from 5 mg with these biologics and demards u have to be monitored and i hate all those blood tests and needles. They say how dangerous steroids are so why dont they monitor them and at least i know the dangers as theyve been used for over 50 years. If i have a flair i take 20 mg and back to 5 in a couple of days.

[Hidden in reply to Augustus-6]

Vasculitis is an autoimmune disease of the blood vessels. It is a very rare and dangerous disease. You can't safely monitor your own steroids, as they are so bad. They should be monitored, and reduced gradually and not just stopped.

[Hidden in reply to Hidden]

Why do you call drugs like Methotrexate 'new'? It has been used since 1940 for Leukaemia and other cancers, and for RA in lower doses since the 1970s.

[Augustus-6 in reply to Hidden]

Yes but some are new and the side effects of methotrexate is terrifyng

[Hidden]

Steroids side effects are scary too.

The following is taken from a free booklet from NRAS (National Rheumatoid Arthiritis Society )

"When are steroids used?

Steroids are used sparingly for

conditions such as RA, because of the

side effects, in the smallest possible

dose for the shortest time. They can be

very useful at the start of treatment

either as a joint injection or an

occasional intra-muscular or intra-

venous dose.

A helpful article on steroid joint

injections can be found at:

nras.org.uk/4-tests-treatme...

and-information

—Steroids can be very effective

in treating a ‘flare up’ of RA by

controlling the symptoms quickly

—Steroids are used with caution

and the doctor will have various

considerations before prescribing

the drug

—When reducing a steroid dose,

your doctor will recommend a very

gradual reduction over time which

allows your body to re-adjust to

producing steroid naturally.

What are the possible side

effects of tablets used for

a short time or injections

into a muscle or vein?

Mild effects may include:

—Red flushing of the face which does

not last

—A metallic taste in the mouth

Hyperactivity

Tiredness

Mood changes

Blurred vision

Rare effect with an infusion into

a vein:

—Hypertension (raised blood pressure)

which usually settles by slowing

down the rate of infusion

Extremely rare effects:

An altered level of consciousness

—An altered state of mind

—Seizures "

[Augustus-6 in reply to Hidden]

I find it all very odd. I was diagnosed the same time as 2 others one was 35 the other 40 i was 57 this was 15 years ago they took the cocktails of demards biologics etc and the younger one died a few years ago before going blind the second worked in my bank and got worse she was forced to retire. Millions are on steroids as the only treatment ie ploymyalgia rhumatica, lupus, spndilitis etc so why are they singling out ra saying how dangerous pred is?? I know a girl who recently had a healthy baby shes been on pred for 10 years when she asked her doctor he said millions have babies on steroids. Thers so many contradictions on some sites they say 5 mg and lower is considerd pretty safe. They have tried to force me into the drugs through fear but im 72 now and when i get the flairs down im very active despite the fact i was diagnosed as the most aggressive strongly positive ra.

[Hidden in reply to Augustus-6]

Ask yourself, why are the rheumatology clinics packed to the rafters with patients, all successfully using DMARDS and biological with very few problems, and only occasionally using steroids. There are some conditions that only steroids are necessary. Most people can't wait to get off them.

[helixhelix]

Personally the things you call dangerous drugs like Methotrexate have given me my life back. No side effects, no problems, just living a normal life. And I've been on them for 7 years now.

On the other hand I hate oral steroids as they affect me mentally. And 5mg does nothing for me anyway!

There are always individual examples, good and bad, and we all know stories of people who have done well or badly on drug X or Y. But overall once you look at results of people in their thousands, most people do well on the RA drugs. And high dose steroids (over 10mg) for a long time do create problems in the long term. Not just bones but problems if you have a serious infection and so on.

But we can each make our own decisions. Please just make sure you wear a medical alert bracelet that says that you are taking them as even tho' a low dose you've been on them a long time.

[Augustus-6 in reply to helixhelix]

Well its nice for you that u are so helped by methotrexate i understood that too weakens the imune system. Im not saying pred is a healthy choice but there are several conditions where the only option for treatment is pred ie I have a friend with PMR who has taked pred for years and a girl who has also taken it for 10 years and had a healthy baby recently. We dont know how many have died. 15 years ago when i was diagnosed i went to a get together at the hospital for all r/a sufferers. I was shocked and terrified at the state of them the medical and surgical procedures really shocked me so I spent the next 13 years pretty much drug free. Then two years ago i needed to drive urgently so i asked the doctor for a pred shot but he was out of stock and prescribed pills instead and bingo i became addicted. There are many blogs who are anti drugs i know a doctor in Berlin and another in Geneva and they themselves try not to take drugs. In fact they are both terrified of anaesthetic too. Then theres you and many others who are pro drugs. I feel worried by the toxic overload that they have to be moniterd such alot ( with pred its once a year) and with all drugs the cause is not treated. No one seems to know why our bodies attacks itself but there must be a reason. Thank you for your response but im addicted to pred ive used various natural treatments to varying degress of success.