I was wondering if anyone had been given steroids for other medical conditions and found it helped with fibro pain? I was diagnosed with a bowel prob and h piylor. I was admitted to hospital on leaving my consultant prescribed me prednisolone I took 6 tablets for 6 days then 5 for 5 days and so on until I finished the 8 week course... the side affects were I put weight on,could not sleep,they did not help the bowel prob still running to the loo...the only good thing was my fibro pain was manageable I could walk without to much pain also I could climb my stairs without going up on my hands...I have now been off them since the end of DEC and I am now back in pain...my doc put me on dyhidrcodine for the pain,,until recently I had been on them for 7years...my consultant advised me to come off them as they can be addictive... so I did,,but was on the steroids so my pain was not that bad...as I said I am back walking like I am an 80 year old woman..and after my colonoscopy on the 20th of Jan 2016 my consultant as put me back on steroids!!!! I'm still trying to loose the weight from the last lot I was on..I have an appointment in Feb with a rheumatologist I will be asking him if their is other medication out their I can take instead of steroids!!!!
Birkie...(still confused)!!!!!!!
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These days I take 5 mg of prednisone (1 tablet) once every two days to keep things flexible and pain manageable. Difficult to get a prescription though. I get 100 tablets at a time. I'm not entirely out of pain but where it used to be a 6 out of 10, now it wanders about at a 3 out of 10. And I don't get breakthrough pain as in 8 out of 10 or agony.
Nothing else works. Narcotics make me nauseous.
I also take a muscle relaxant in the evening which also helps a great deal.
Birkie, I will strongly recommend you to stay away from prednisone as there are so many serious side effects especially from long term use. Is a marvelous drug for emergency cases though.
LDN ( low dose naltrexone) is a drug used for various autoimmune conditions, cancer, CFS, Fibromyalgia, Chron, Colitis ulcerosa and many more.
LDN is completely safe, non toxic, cheap and has been a life saver/changer for many. It is an immune regulator and has virtually no side effects. It's a prescription drug.
I have taken it since Nov. 15 and has seen improvement in fibro pain, sleep, energy and mood. I have got much help and support from various fb groups, fx. LDN Research Trust, Low Dose Naltrexone, GOT ENDORPHINES, and a Danish and Norwegian group (I'm from Denmark). I have learned a lot from the articles in their files.
Many doctors don't know about this amazing drug, so it's important to educate oneself as much as possible.
Hi RS, I hope people will look into this. I've been reading about LDN for more than ten years, usually pertaining to MS but first because it helped alcoholics trying to overcome alcoholism. I see why it hasn't made it to mainstream medicine because it is probably too inexpensive to bother about.
I notice the LDN Science offers a first time doctor consultation for $210 over the internet to figure out your dose and then they give you a prescription so you can start a trial. I think this is very fair. Follow up are $110 for fifteen minute calls every six months which I think seem very reasonable if it makes a huge difference in your health. I think many autoimmune conditions including Hashimoto's are considered for this treatment.
So you have only been on it since Nov. and feel improvement? I hope if that continues that you will keep posting on this site. Who knows if it isn't an even better treatment than for Hashimoto than thyroid hormone. It's a possibility. Thanks for the reminder.
Hi heloise. Alcoholics were treated with Naltrexone in much higher doses 50-300 mg.
LDN is low dose Naltrexone and is given in 4.5 mg and lower. If you have an open minded GP you could get a prescription from him. Otherwise an Internet consultation is an option of course. I know that many people with Hashimoto must lower their dose of thyroid hormone after some time on LDN and some even won't need it anymore.
I will keep posting about LDN and how I'm doing. All the best!
i feel it should be a last resort. I was on ldn and realized that i would be stuck on the the rest of my life, potentially, because i never found and treated THE REASON that i developed autoimmune disease. Taking ldn, is like being tied to any other medicine. Functional medicine, can get rid of autoimmune disease by healing the immune system. Testing for food sensitivities and intestinal issues is huge. Getting rid of offending foods, getting your gut health/immune system in order makes more sense to me. The natural approach.
Thanks for the input. Yes, if you can do all those things, much better, but not so easy to do. Did you have any benefit from the LDN? Did it reduce any antibody attacks? I wonder if the sensitivity tests are that accurate. Which tests did you use to discover sensitivities? Some people don't know what they are or sometimes that they even have them. If it stops the progression of MS in some cases, it must have some effect.
i was not able to use it long enough to notice anything. I had so many symptoms that adding a new drug, was a mistake, because i didn't know what was what. I was going on to t3 only at the time. It was $200.00 for 5 minutes, to get 6 months of prescriptions anyway. I had the tablets, but no one could guarantee the safety or potency, on any forum, since they were bought online.
I have a functional medicine doc helping me now and she wants to work on healing my severe leaky gut first. ldn being a last resort.
I do agree with you faith, that the main thing is to find the reason for the autoimmune disease, and go the natural way of healing. I do that too, BUT while doing that I would rather be on nontoxic LDN, than steroids.
Often the cause of why we get autoimmune diseases lies in our genes, and lifestyle. We can change our lifestyle, and should, but we are stuck with our genes.
I've used tens of years, a great amount of money, to try to heal my issues and finding the 26 food items I was sensitive to was a big step in the right direction. But I could never achieve what LDN is doing for me. So I'm grateful for this nontoxic, cheap drug with very few and passing side effects even if it means I will have to use it permanently 😊
All autoimmune is caused by a leaky gut or so they say. They have ways of healing that. Genetics also means, a genetic predisposition to having a leaky gut. My doctor says it runs in family's.
I guess i am not to the point of relying on a drug permanently. I want to get off of my thyroid meds too. I really don't feel well.
You are quite right in what you say about leaky gut and genetic predisposition. It can be a ruff road to find healing and there is a jungle of advices and really clever people offering their help.
I red enough about LDN to be convinced that it it the way for me and that it can heal my leaky gut, fibro, lichen sclerosis, migraines, CFS, low thyroid function.
There is an overwhelming crowd of witnesses, both patients and doctors. But we are all different and must make up our own mind to choose the road we want to walk.
Hope you find yours and get relief from your sufferings soon!
ldn does not heal leaky gut or the immune system, in that , the original cause was never addressed and treated. It does not add back missing bacteria, digestive enzymes, treat bad bacteria, it doesn't address the issues with neurotransmitters that cause disregulation of cortisol. You start back over ill once the drug is stopped. I just don't see how this is a good option, unless you have exhausted all that first. But, you need to know why your body has malfunctioned and why you became ill in the first place.
You do need to address all issues as LDN doesn't heal leaky gut, etc directly but modulates the immune system so allowing the healing of leaky gut, etc.
For many (including myself) simply adding thyroid supplement further weakened compromised adrenals and immune system so causing more intolerances.
When the body becomes stuck in a chronic state of immune system overload the result is adrenal insufficiency, gut dysbiosis, impaired digestion, inflammation, and thyroid hormone release abnormalities, it is hard to break this self sustaining cycle because of the huge immune responses & resulting inflammation.
An imbalance of TH-1 & TH-2 immune responses found in many Hashi suffers and leading to much inflammation can be lessened with LDN & so reducing thyroid antibody counts. This is a result of quelling TH-17 that are are a subset of T helper cells producing interleukin 17 (IL-17) & are now commonly associated with autoimmune disease.
Naltrexone increases the body’s production of the beta and metenkephalin endorphins and it has been suggested that it can double or even triple the activity of natural killer cells.
Gut issues may then be treated with Betaine HCL, digestive enzymes, biliary support and probiotics, etc. so allowing good absorption of all iron and nutrients and with a low antibody count will encourage improved thyroid & adrenal function.
Although investigated thoroughly I have not tried LDN as am already supplementing Curcumin and Kaprex A1 which have much the same effects and have worked well for me.
I have read LDN can be obtained on presciption in the UK if you have a sympathetic GP/endo.
Flower
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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
We need to find out and treat WHY our bodies are ill, not take another drug. We need to treat WHY our brains don't make enough Endorphines. Maybe pituitary problems need to be ruled out. I have no "feel good hormones"..tests have shown. I also have a pituitary issues that needs to be further addressed. Doctors are not doing enough to help their patients.
You are absolutely right that LDN doesn't heal anything, but it triggers the body to create more endorfins and enkephalins and that has a healing effect on the body. Otherwise you wouldn't see the amazing results in so many serious diseases.
But it doesn't heal the reason why we need this boosting effect for our immune system.
But as long as we make efforts (as much as we can!) to change lifestyle, avoid offensive foods, cut out sugar, grains, soy etc. Optimize vitamins, minerals and gut flora, I gratefully accept the help I get from LDN too 😊
Thank you so much for your information on that drug..do you think my rheumatologist will know about the drug? I have an app on 10th feb.. I hope he can help me as I can no longer stand this pain..I am now only on paracetamol..thats a laugh does nothing for my fibromyalgia..so give up in that!!!!..again thanks for your reply
It's a good question if he known about LDN, many doctors never heard about it. But you could give him the information about the websites and ask him to take a look at it. here is a link to fact sheets about LDN designed for doctors. I printed it out for my GP but he would only refer me to a pain clinic where I got it without problems.
I would proceed with great caution. My daughter was put on prednisone during acute EBV. She now has low adrenal function and low neutrophil count, both of which can be caused by prednisone.
Karen,
You have an awful lot going on and must feel very unwell.
Once your thyroid condition is diagnosed and you are medicated you may find lots of these other health issues may better.
Inflammation can be caused by unbalanced thyroid hormones and a high antibody count.
Have you had thyroid antibodies checked yet?
Ask your doctor to test TPOAb & TGAb & TSIAb to determine Hashimotos or Graves.
Thyroid hormone replacement will help suppress attacks in Hashimotos and reduce inflammation ( fibro pain).
I have found Curcumin to be excellent in reducing inflammation ( see links below).
Many members have found Low Dose Naltrexone to be beneficial as rsae advises above.
Are you having treatment for H.Pylori and the kidney infection ?
Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
My GP keeps saying my thyroid is now normal,,I went overactive in Oct of 2015..he just said we will wait six weeks,,,take more blood!!! Waited for the six wks,,,suffering!! Blood came bk normal...this has been going on for over two years now..I have seen two endos who think I have thiyrositis...technical I'm attacking my own thyroid but no medication has been offered to me...as my bloods are normal..I have a thyroid blood printout but can't understand it.....(serum THS level 1.06 mU/L. 0.30 4.50 m U/L but I will say nearly every blood test for thyroid has been done late in the afternoon its usually the only time you can see the nurse ..and when I have seen the GP on a late app he still takes blood for a thyroid test!!!
I cannot see any antibody checks on my printout but the rheumatoid factor screen test (hdavies) -A says normal no action but no values just says negative ? I always thought fibromialgia was autoimmune??? I want to get better or at least get some of my life back..I no longer go out with friends because of my awful conditions.. but when you explain this to a GP or consultant they always come up with the old chestnut...or your depressed!!!! NO IM NOT,,,just sick of not being heard or treated!!!!!
Your TSH is in range but this doesn't mean you don't have a thyroid condition.
Ask for FT4, FT3 and thyroid antibodies TPOAb & TGAb to be tested in order to get a clearer picture. If doctor is uncooperative you can use private labs as many members have to. ( link below).
TSH ( thyroid stimulating hormone) fluctuates in a circadian pattern. Therefore having blood drawn at the earliest appointment whilst fasting ( only water) will ensure the highest reading. However if you are suffering Hashi attacks the TSH will fluctuate further as the thyroid is attacked and large amounts of hormone are secreted into the blood stream making you temporarily hyperthyroid.
Re LDN, if this were me I would email details of LDN ahead to endos secretary. I would also ring to advise of this action and ask her to kindly pass details onto endo just before my appointment.
Having H.Pylori is paramount in your conditions as will play havoc with your gut and compromise immune system, so effecting thyroid and adrenal function. If you sort your gut out the rest of your illnesses might improve.
If you are really unhappy with the treatment offered by your present endo, you could email louise.warvill@thyroiduk.org.uk for a list of sympathetic endos/doctors that members have had positive experiences with.
Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Sometimes doctors say you have fibro pain when it is actually pain caused by adrenal glands not working properly. About a month ago I had a lot of pain, which had come on after taking various medications including steroids. My doctor was quick to say fibro pain but I researched and it matched up with the pain you get from your adrenal glands not working properly, which also explained a lot of other symptoms the doctors ignored or could not explain or connect. The same thing happened, the steroids stopped the pain while Itook then but then it all came back. Why? I think it is because when you have over active adrenal glands - which sometimes affects the thyroid too - they can often produce too much cortisol, which can give you lots of symptoms and problems - many just say oh well I dont feel well today or it is old age or whatever -
then when you take steroids or other drugs they can make it better for a bit and then worse because while you take them it covers it up and then the adrenal glands go even more wacky because the medication increased the cortisol even more. In effect you poured petrol onto a fire. Giving you more steroids wont solve it. You may have to deal with the adrenal glands themselves but the good news is that when you have sorted then the thyroid problem may well go away too.
I was put on steroids for my cough and cold in December 2014 as well as my antibiotics and not sure why for just a cough and cold though the cough was bad. I read the instructions and noticed they were not suitable for people with thyroid problems. I was prescribed Prednisolone. Read your instructions too for interest sake. I mentioned this to the pharmacist who said keep taking your thyroid tablets. I was then prescribed second week of them but I did not take them. I understood Prednisolone was for serious problems like for asthma attacks and then only a 3 day dose not for cough and cold. Sorry I cannot be of more help.
To be quite truthful I have Been unwell since being diagnosed with M/E fibro/ since 2006...I have now been diagnosed with H piylor/ and bowel problems... I still have loose stools..had a colonoscopy on Jan 20th consultan took biopsys of the large intestin... awaiting results but the thing that bugged me was after the colonoscopy he said I'm going to put you on some medication to help with the bowls problems.. he never said what medication!!! And I still felt woozzy after the sedation..I found out when I received it....PREDNISOLONE!!!!! When I was admitted in to hospital with the bowle/stomach problems he gave me the same medication I took it for 8 weeks....it never stopped my bowls problems still ran to the loo even tho I was on this medication... what the hell did he want me to take it for...iv just come off the stuff at the and of DEC!!!! And I have side affects too..I think GP and consultants/endos just throw meds at you but not the right ones its their training) Im sure they don't look at your symptoms anymore,,my GP put me on antidepressants for the menupause... I chucked them after six months----i felt like a zombie...and it did nothing for my menupausal symptoms..unfortunately I cannot take HRT so my GP has given up on me for that too,,,its always the same at the docs they advise drugs first...instead of addressing the symptoms!!!
I think you are right. Since learning that a friend of mine has controlled her breast cancer, after mastectomy, with only homeopathic remedies refusing chemo or radiotherapy and drugs and is still going strong after 7 years taking care of herself (off sugar and alcohol which cancer cells love) I decided to look into that route and I am going down it myself for my hypothyroidism. My local thyroid support group for this problem all say the same as you about the doctors and are informing themselves about how to deal with their problems.
My friend lent me a magazine she gets when she orders her supplements from a Robert Redfern whose site is Good Health Naturally. Very informative. I was also recommended to a Dr Mercola website and I get email newsletters most days. He has been around for a long time. Perhaps google him and read what he has to say to start with. I find him most interesting and you have lost nothing by getting to know his info. He is an American doctor and he does have his own supplements but they are never pushed. His site is all about educating yourself and a good read about various topics.
As for HRT, there are many herbs etc that are good for the menopause. I did not take any myself but Evening Primrose was the popular remedy in the early 90s though one does not hear it mentioned today. I am sure if you can get a newsletter from Robert Redfern (not Redford) there would be some recommendations there that one could try. It is worth a try as what else have you got.
I was put on prednisilone (sp?) a few years ago, when the doctor thought my shoulder pain was due to polymyalgia rheumatica (silly so-and-so's have now found out - several years later - that they've left me with an untreated rotator cuff problem all that time because they failed to realise that's what it was). For the first two weeks I felt better than I've done in years. I thought I'd found my "miracle drug"! After that, my all-over joint pain came back with a vengeance and it took me a whole year to wean myself off them very carefully indeed.
Now I find, thanks to this forum and Dr P, that I've probably had an adrenal problem (along with thyroid problem) for years. The steroids will simply have made this so much worse and put me in a worse place than I was before.
So please do be careful with steroids. It feels like a miracle at first but, if it goes the way my experience with them did, it simply makes matters so much worse.
I was prescribed steroids for a very short time for an overactive thyroid gland problem and 10 years later I was diagnosed with Avascular Necrosis (an agonising and debilitating pain which caused the blood not to circulate around the hip bones) and had both my hip bones replaced as a result.
I'm so sorry to hear that you were given steroids for an overactive thyroid..I was diagnosed twice for an overactive thyroid..but not given any medication..and when I was given steroids for H piylor colitis I read the leaflet from cover to cover,,,the side affects bothered me as I was too be on them for 8 weeks..I'm very sure it stated that you should not take them if you have thyroid problems.. that made me wonder if I would be OK taking them as my endo said I had thiyrositis,, I was attacking my own thyroid) making it go overactive she called them flare ups,,,its no wonder you have been left with this problem and it must have been awful having your hips replaced..I hope you are as well as you can be...think doctors ect should be made accountable for prescribing drugs that affect us so bad
I quite agree Birkie that they should be made accountable. When I was given steroids all those years ago, they were unaware of the full effect of steroids on the human body (so I was told by a nurse some years later). I had my hip replacements in 1997 and 1998 and I was given the steroids some 10 years previously. I have since learned that anyone prone to blood clots should never be prescribed steroids and I developed DVT in my leg following my first hip replacement.
Rose54. You do have another choice and that is LDN, which I wrote about in my answer to Birkie. There are such great results from treating autoimmune diseases with LDN also polymyalgia rheumatica. Pleease check it out on the websites I gave Birkie 🙏🏻
LDN is Low dose Naltrexone, which blocks the receptors for endorfins and thereby triggers the body to produce much more endorfins and enkephalins, which have a boosting effect on the immune system - and that makes it possible for healing especially autoimmune conditions.
You can get a lot of good info on the websites I gave Birkie previously.
I don't know about your fibro pain but I have lymphocytic colitis and when it flares I take steroids but not Prednisolone, I have Budesonide which is especially for bowel problems in that it doesn't start to be absorbed until it gets into the bowel. Consequently, I haven't suffered from weight gain, insomnia or any of the other steroid induced side effects. Budesonide has been a Godsend to me when my bowels are flaring. Did you have biopsies taken during your colonoscopy? Lymphocytic colitis is part of the Microscopic Colitis and Collagenous Colitis group and only shows up in a biopsy. It is an Imflammatory Bowel Disease rather than irritable bowel disorder and is also auto immune, so your bowel problems may be down to this. Are you taking Imodium ? That might help to at least slow down your bowels. Hope you get sorted soon. Clemmie
Yes I had my colonoscopy on the 20th Jan it took a month before I was well enough to have it as I am still having loose bowels.. he took five biopsys..but as I said he prescribed me steroids AGAIN!!!! They never helped with my bowle problems when I was on them..so can't understand why he wants me on them again..the only comfort was the lessening of my fibro pain ho and my appetite sky rocketed... I'm not a big eater but was always famished when I was on steroids..on them for 8 weeks..and they put weight on me even though I was running to the loo after eating..still am!!! And I'm still trying to loose the weight..I think if I had not taken the steroids I would have lost weight..I remember my dad being on steroids for cancer my dad was skinny he never put weight on all his life..until he was put on steroids..he got a belly n double chin in a very short time..unfortunately he died not long after..I was told by my consultant not to take medication for diarrhea..as it can cause flare ups??? It only happens when I eat..drinking is OK...he also prescribed me buscopan and said I should take them after eating..it will
Help with the cramps of which i am still having too)
Also I have no follow up with either the consultant or GP,,,after getting the steroids from my surgery..that's where my consultant sent the letter for my GP I asked if I would need to see him..after the receptionist went in to see him the answer was NO!!! He does not want to see you..well I think I would like to see him..as I want to know why he put me back on steroids!!
I see a gastroenterologist and he prescribes Budesonide when I have a flare and Imodium too. Imodium is a recognised medication for colitis and I have been encouraged to take it . It seems to help me until the Budesonide starts to reduce the inflammation, although I know that it doesn't help some people. My guess is that you aren't being prescribed Budesonide because it is very expensive. Also, you will need to find out the results of your biopsies.
I have discovered that it is anti inflammatory medications that cause my colitis to flare so have to be careful if/when I take them.
I have found a forum for people with microscopic colitis and it has been very informative. You might like to have a look at it. It's a US based site but there are all nationalities on there. Have a look at perskyfarms.com
Hi Steroids would make the nearly dying feels lot better. Yes they would more than likely make you feel a lot better but they are dangerous. One of the long term side effect is thickening of the heart wall. Have you ever consulted with any body for pregnenalone or DHEA, they me a better option.
Again my GP has let me down,,I received a letter from my surgery saying I would need to make an app to see the doctor about my colonoscopy results.I called in to pick up the medication my consultant pescribed me to help with loose stools the receptonist talked to the doc and came back with a pescription..as I said in other posts it was steroids AGAIN!!!! I did ask if the doctor needed to see me she said no..but when I found out the script was for steroids I made an app to see a doctor..on seeing her she said :ho I suppose your here about the medication you're consultant has prescribed for you...I told her the long story about coming to the surgery to get said script but received steroids..was then informed he had actually prescribed me some medication that actually is for the bowel... how the hell could my doc get it wrong again with me!!!!! He knew about this medication but put me on steroids..my consultant did not prescribe steroids..I really have had enough of this doc,,,he is head of practice..I discussed this with the doc I was seeing and asked why I was not given the right medication and why did he not want to see me?? She brushed it under the carpet and did not want to comment...I have been really I'll since sep 2015 when I was vometing black stuff back and asked him to admitt me in to hospital he refused...talk about playing god...he does!!!! I am trying to recover but do also have ME/fibro..I have also been diagnosed with H piylor,,my GP has been unprofessional in treating me..lost results''no addmitance to hospital,wrong medication given..I'm at my wits end with him!!!!!!
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Joint pain
Does anyone know if steroids interact with thyroxine? 
consultant says I haven not got a thyroid problem
Miss diagnosis 
How much weight in general have people put on due to thyroid issues?
