Rs sufferer

[Rocky07]

Re my posts about prednisolone there has to be an alternative this is the 20th century what are the medical scientist doing there are obviously things there that are not toxic

[helixhelix]

The thing is that steroids can literally save people's lives. You've obviously had problems with them, but for some they allow a normal life.

Every drug, even herbal remedies marketed as natural, have positives and negatives so you and your doctors have to weigh up the positives and negatives. What I've learnt is that you have to ask questions when doctors suggest something.

[Rocky07 in reply to helixhelix]

Thank you for your reply but I believe there is not enough explanation from doctors when discussing the bad negatives against the positives and not spending enough time with you to explain at giving you better alternatives there needs to be a lot more education

[Fra22-57 in reply to Rocky07]

I agree .you just get sent home with a leaflet to read up on or explanation is way over your head. Alot of drugs you are given are cheaper than alternatives too.

[Simba1992 in reply to Rocky07]

I so agree with you. You as a patient are in a situation where you need to decide on a treatment line that may cause you suffering for the rest of your life or may help you control your illness and go on with your life for a time that is limited. Patients really need to know the statistics on the efficacy and side effects of drug treatments.The doctors need to make you aware that they can only offer symptom relief, not cure the disease and he needs to also to make you aware that meds do not work for everyone and work in different ways. The patient has the right to hear also about alternative treatments that have been shown to benefit and shown to be a plan B worth looking into. The rheumies seldom have this expertise but should be able to refer you to someone that has. Unfortunately all too often the patients inquiries about alternative treatments are met with hostility, even a threat that the doctor is not willing to help you if you do not go along with the med protocol offered.

[Rocky07 in reply to Simba1992]

So right simba I think its all to do with pharmaceutical profits

[MargaretStirling in reply to Simba1992]

It all boils down to money acupuncture is an alternative yourDr can suggest this to you Not every physiotherist in the hospital has the experience to give you this treatment and it's time consuming . Over a period of time it give you relief . It dosnt affect your stomachs nor your kidneys or liver . Next time you see your Dr ask him if the physiotherist at your NH clinic in your area could give you a course of needles. Patches are also good pain relieving . You get them in different strengths . There is alternatives.

[Pat64 in reply to Simba1992]

I agree totally. When I refused Methotrexate I felt abandoned by my rheumy and was never offered any other drug for 3 years. I was wondering what you meant by going on with the rest of your life for a time that is limited. Do some drugs eventually stop working after a while? Pat 64.

[Simba1992 in reply to Pat64]

This is relevant information that patients should be given about RA meds, yes they do stop working at some point or you need to stop taking them because of adverse effects. The time of efficacy varies but there are statistics that give you some idea.

[Californiadreamer]

I so agree with you. I was diagnosed in 1992 and prescribed hydroxochlorquin...I refused to take. Mtx andSSZ. The rheumatologist virtually didn't send me any more appointments and i continued on hydro, researched and discovered info on Minocycline...My sympathetic gp prescribed it for me and for many years I followed this regime, self regulated. I was not monitored by Ra clinics but had occasional joint injections from my gp. This allowed me to lead a fairly normal life until last year when a tremendous flare eventually led to an Ra clinic.

Again i was offered the same old drugs as in 1992. I gave in and took the Ssz route, for 3 months but with no effect. I have now been offered Enbrel and am due to start any day.

I questioned the rheumy about low dose naltrexone, as i would like to try treatment with that, he was dismissive about that and Minocycline and seem to regard them as quackery. So consequently when i start Enbrel it will be costing the NHS £179 per weekly injection.

If a patient prefers to use more unorthodox medication/treatment why not let them try under supervision?

Minocycline and LDN have been in use as treatment for other illnesses for many years, so they are safe and low cost. Minocycline worked for me for many years and recent x-rays show my joints are undamaged.

What harm would it do???? It may work for some, it's less toxic.

And it would save the NHS thousands of pounds..????

I would love a proper answer to this question.

[Simba1992 in reply to Californiadreamer]

I think there are many of us who would want to. Fortunately there are a growing number of MDs that are jumping off the symptom oriented approach to health problems and are more interested in understanding the individual story of the patient and combining the dots that have led to the disease. The patient has very little help surrounded by specialists all doing their own thing with no one coordinating and understanding how everything is interconnected.

[MargaretStirling]

Steroids tablets are he last kind of tablet I will take I've had to take a course of 5 days when I take a chest infection I have asthma but I find within that few days my feet begin to swell up

[Tara26186]

Have you tried curcumin tablets? I take one every morning and since then I only take prednisolone when get major major flare up. I used to take at least 4 a day sometimes 8 until tried other things.

[Rocky07 in reply to Tara26186]

Thanks Tara could you tell me if cirrcium causes any stomach problems also how long do you take it before you get off prednisolone

[Tara26186 in reply to Rocky07]

Hi they seem to be okay as far as I know. When started to feel better just stopped the steroids and now just take them on really really bad days.

[Simba1992]

This is quite interesting read for those thinking about treatment with pred.

ncbi.nlm.nih.gov/pmc/articl...

[Simba1992 in reply to Simba1992]

Sorry, wrong link.

naturalendocrinesolutions.c...