Need Critical Advice: Prednisone

[Orius]

I write this with a heavy heart. To be honest, I am kind of desperate.

I have ulcerative colitis. I just had remission for 2 years, but I have now been flaring since the end of September. The flare has been severe, but now is entering the recovery phase.

All modern drugs for this disease have failed. Prednisone is really all I can do.

I got word recently that I have osteoporosis in my spine and hips. I am only 34. Prednisone has devastated my skeleton. Doctors are saying that in order to avoid future prednisone use, I should just get my colon removed and get an ileostomy... but I don't want to do that. It would radically alter my body in an unpredictable way, plus I just don't want to live with a bag.

I am so sad that this is the best modern medicine can do: a steroid that is 50+ years old.

In the past I have taken DHEA and pregnenolone while on prednisone to help stave off bone loss, but for some reason this time those two hormones make my inflammation return. I can't take oral calcium because high dose mineral drugs give me painful, bloody diarrhea.

The good news is that during my 2 years of remission, I was able to weight train and take daily magnesium injections, plus a high mineral diet. I regained 17% of my spine and hips, when the normal range is 3% over 3 years WITH bisphosphenate drugs. So if I can get into remission again, bone recovery is possible.

This brings me to this community.

I can't weight train right now, but is there something I can do to replace prednisone? Or at least counter-act its side effects?

What I need:
- bone protection and resorption
- muscle regrowth (I am severely cachexic right now, and underweight, thanks to prednisone taking the entire hormone cascade offline)
- a means of combating inflammation
- any other support that comes to mind

Above all I need some hope. @haidut

Thanks a lot... truly.

 

[Max23]

I feel for you. I have similar problems. It is very painful to walk, my muscles and spine keep getting worse I am in severe pain. My problem is similar to you, but I don´t know the cause. Oral intake causes problems so I need to try other methods. I am about to try cortisol for my eczema.
There are also sublingual and transdermal methods. Against osteoporosis haidut has suggested to work on the mitochondria. I ordered CortiNon for that. He has suggested methylene blue. I also ordered cyproheptadine. He has said that things that block serotonine and estrogen help against osteoporosis. Haiduts products should go into circulation before they start entering the gut. Baths with minerals are also an option. Transcutaneous vitamin D and K. I don´t know if you can take doxycyclin. I would take it, it can work against osteoporosis.
I don´t know much about ulcerative colitis. Some thoughts that come to mind are progesterone, heavy metal detox (maybe saunas, alternative medicine stuff or follow someones protocol), maybe gluten free diet, coeliac tests. I read on wikipedia about helminthic therapy for this problem, which is interesting. I would try it if nothing else works and live like a goa´uld.

I´m no expert. Just offering my imput.
There are other sufferers. You are not alone.

 

[Ella]

My heart goes out to you. The same happen to my husband. He is 65 now and his ulcerative colitis occurred when he was 28 yro. I had just come out of hospital with my first born when my husband became terribly ill. I was nursing my first baby and husband at the same time. I just cried every day as I watched him become skin and bones. I truly believed he was going to die.

He was given the same prognosis by three different specialists. Have the bowels removed and wear a colostomy bag for the rest of his life.

Please don't accept this as a solution. It is no solution - butchering a perfectly healthy body.

I refused to accept the prognosis and found my husband an integrative gastroentrologist who told me my husband was not going to die. He would get better. I did not believe him but slowly, slowly he was able to return to work. My husband was also placed on steroid medications and I can't remember whether it was prednisone or prednisolone. I am not sure whether it matters unless you have a bad liver.

The side effects are reversible.

The steriod meds saved my husband's life and allowed me time to research the underlying cause for the UC.

The UC started when my husband starting taking painkillers (ibuprofen) to help with his back pain. His back was going out every couple of weeks after doing hard labouring work like jack hammering. We were building our first home and he was pushing trying to get it finished before the baby arrived. He was visiting the chiropractor fortnightly.

In one of Dr Peat's interviews with Jodelle, he talks about how a well-nourished body is resilient to the adverse effects of steroidal medications such as prednisolone. I have witnessed this with my husband and with post-menopausal women in their mid to late 80's. Drs are pretty amazed that these women have done so well on steriods for > 18 months.

We have checked bone markers and bone loss is no greater than what is expected for their age. No diabetes. This is a very difficult age for compliance. I wish they would remember to take their pregnenolone and progesterone more often, but it seems what they do take is beneficial. But the greatest impact has been in getting the calories and good quality protein into their diet. 80 - 100 grams is a big ask for these ladies.

You really need a carer who provides the meals for them. My husband had me to make sure he was well-fed with easy to digest and warming foods. No cold foods. Cooked and easy to digest like stews and soups. I didn't know about Peat's work in these early days. I followed chinese medicine principles that foods must be warming to facilitate digestion for those who have digestive weakness. I fed him breakfast, lunch and dinner with snacks in between. Main meals were normally three courses consisting of soup, mains and dessert. He always had a home cooked lunch which he religiously took to work. He does not eat salads but loves starchy foods like potatoes and rice and loves gelatin based soups and stews.

He also was infected with h. pylori. Gastro dr. gave him the all clear after endoscopy and gastroscopy. However, I found he tested +ve for h. pylori and questioned the specialist why he had not taken a biospy to culture. He booked my husband in straight away, after seeing my results and sure enough, my husband had high titres of hp. Dr was scared I was going to sue him for not taking the biospy in the first instance. He told me because my husband was not elderly and showing symptoms, it wasn't standard practice to take a biospy. I thought why the **** do they stick cameras up both ends. see patches of ulceration and not bother to take a biospy?

Don't let them remove your bowels. Search for the underlying cause. Have you tried antibiotics?
Has dr cultured stool or had stool tested?

What about biospy?

Look at the medications your are taking? Check if ulcerative colitis is a known side effect.

Have you checked albumin and globulins?

Steriod meds suppress immune system, so if you are dealing with some sort of pathogen immune system will have a hard time eradicating it.

My husband drinks milk, coffee and fruit which he was not able to tolerate for a very long time especially the milk. The milk we did in baby steps with sugar and has never looked back. He is able to eat everything now.

I know dairy will be a big challenge and I am not suggesting you try this. You need to get the UC under control and slowly rehabilitate the gut.

Don't worry too much about the exercise, you need all the energy to deal with what is ailing the bowel.

Have you investigated your thyroid function.

Prevalence of Graves Disease in Patients With Ulcerative Colitis - Full Text View - ClinicalTrials.gov

 

[Rick K]

Boron may be the most overlooked mineral to supplement with. In N. America our daily intake is very low and in ranges of 10-15 mg daily you will significantly increase bone mass and density. To help facilitate this also include vitamins A, D and K. Do your research here. Boron is also significantly anti-inflammatory.