Prednisolone and ME/CFS

[snowathlete]

I am probably going to start a high dose (40mg) of this tomorrow, gradually tapering off 5mg a week over the next 8 weeks. I am not taking it for ME/CFS, I am taking it to try and get my ulcerative colitis into remission, but I am very concerned about the impact on my ME/CFS along with the Bartonella infection I was diagnosed with and have been treating for the last 8 months.

My limited understanding is that this will suppress my immune system and cortisol production and at first I may feel pretty good, but ultimately it might allow the Bartonella and any other undiagnosed pathogen I may have linked with ME/CFS to proliferate while I am on it.

I just don't know what else to do. The UC is not getting better on the mesalazine treatment I have been taking and I continue to lose weight - I've already lost more than 40lbs over the last few months and my gastro wants to halt that decline and believes the steroid is likely to knock me into remission. In terms of alternative treatments, I could have other even harsher immunomodulatory drugs, such as monoclonal antibodies against TNF-a or have my colon removed. None of these seem like better options really.

I am hoping someone else here will have taken prednisolone at this sort of dose while having ME/CFS and can tell me what to expect?

 

[maryb]

Sorry I can't help but maybe @sianrecovery can - I think she had some late last year?
good luck with it.

 

[Tristen]

If treating the UC is priority, and there is no other treatment option, it seems the benefits may outweigh the potential hazards. Maximize other health maintenance issues simultaneously, giving your system the best shot at keeping the bugs down, in spite of the immune suppression. 8 weeks is a pretty short term, and you won't be at the max dose for that entire time either. My ex had really bad UC, and from what I saw, one doesn't want that to progress. Anyhow, just my personal opinion....certainly nothing professional.

 

[lansbergen]

I would say take shorttime acting form and be very alert for symptom worsening.

 

[sianrecovery]

Hi Snowathlete,

I took 20mg daily prednisolone for a month last November to try and halt the worsening of my sight. I have a number of problems with underlying biofilm infection in my mouth and kidneys, and also have been diagnosed with protomyxzoa, so only did it as a last last resort. I read a few threads on PR, and had a variety of useful things posted to me. People's experience seems to be very mixed - Dreambirdie particularly said steroids had knocked her back a long way, while some others had had better experiences. My own experience of it was that I was OK during the month, and noticed no worsening of my condition afterwards. I tapered very carefully and slowly - I think supporting the adrenals is crucial, and took adrenal cortex extract afterwards. The overall sense I had from ME docs and patients was that if you are going to do it, go in high and stay on them only for as long as it takes for them to achieve their purpose - but be careful how you get back off them. My ME doc's view was that the underlying autoimmunity and associated inflammation was f...ing me up much more than the steroids would. My eyesight stabilised and I haven't yet lost that gain. I had, of course, a lot less pain and more energy on them. It was like a little holiday. She wants me to go back on them for a few months, but I haven't. I would rather do short, high dose stints as necessary. I'm no doc, but it sounds like you are being knocked about very badly by your inflammatory process. BTW, I did them while on augementin and followed them with antifungals. I wonder if you can be using an effective anti-bacterial strategy alongside them?

 

[snowathlete]

Thanks everyone for the helpful replies.
I started Prednisolone today after running it past KDM. Basically, it's that or something even worse as I have to treat my colitis. Hopefully it will get my UC into remission and keep me there without me needing to have more than the 8 week course I've been prescribed. And hopefully I won't get negative effects. We'll see.

 

[snowathlete]

More than three weeks in and my weight loss although it stalled in the first week at 40mg dose, has since increased again as the dose tapered down and I'm losing a lot again now. 45lb so far in six months. So my gastro has agreed for me to tapper back up to 40mg and leave it there a while to see if things improve or not. I think the problem is that my body isn't able to absorb much (drugs as well as food) so I need the higher dose. It seemed to be working the first week... I hope this works else I'm onto harder drugs with bigger risks or surgery. No terrible reaction ME wise as yet.

 

[Ema]

I was helping a friend look for treatments for her Crohn's disease. I know that is not the same as UC but maybe might help?

There is a study on LDN showing something like 80% of people got improvement or remission. It's on Pubmed. PM me if you can't find the link.

The other successful intervention was bupropion. It had to be the immediate release tabs, 100 mg three times a day. It also reduces inflammation.

Also, she got TPN for a while to manage the weight loss issue. She did it at home with a port

Something to check into anyway possibly.

 

[Nielk]

I'm sorry @snowathlete about these challenges that you are having. I had active Crohn's many years ago, and when I had severe symptoms, they put me on high dose IV steroids for a week which really helped kick in some healing. I wonder if your doctors mentioned that as an option? 45 lb loss is really a lot. I hope raising it back to 40 mg will do the trick. Please keep us posted.

 

[snowathlete]

Thanks @Nielk - I think my main worry is that my gastro doesn't think the weight loss is normal for the amount of colitis I have. At least if the higher dose halts the weight loss then that would show its caused by the colitis and then as you say maybe I can have IV to ensure I get enough in my body and maybe that will fix it. It's good to know that's probably an option before trying something else. And it's reassuring that it worked for you!

If the higher dose doesnt show promise then she is going to want to do a full body ct scan to check there is nothing else causing the weight loss, but I'd like to avoid all that radiation if I can.

 

[snowathlete]

Thanks @Ema , LDN is one that I'm aware of. KDM wrote me a script for some recently but I gave up after finding it hard to get hold of. I read a few posts and I think I decided it might be easiest to get a large dose tablet and liquify it but ill probably need a new prescription to get that and find a willing pharmacy. Might be worth a go though, especially as it was on my list of things to try for ME anyway.

I don't know about the others but ill look into them-thanks!

 

[Ema]

Thanks @Ema , LDN is one that I'm aware of. KDM wrote me a script for some recently but I gave up after finding it hard to get hold of. I read a few posts and I think I decided it might be easiest to get a large dose tablet and liquify it but ill probably need a new prescription to get that and find a willing pharmacy. Might be worth a go though, especially as it was on my list of things to try for ME anyway.

I don't know about the others but ill look into them-thanks!

Did you see this?

http://www.antiaging-systems.com/113-naltrexone

 

[snowathlete]

Did you see this?

http://www.antiaging-systems.com/113-naltrexone

No, I don't think so. Though I have a terrible memory, so who knows. But it looks quite a reasonable price, and pretty much ideal in terms of dose and amount. I see KDM in a few weeks so I think I will ask him to write a prescription for this. The original prescription was too precice, with the tappered amounts on it, I think it worked out at 36.5mg or something like that, and trying to get someone to fill the prescription wasn't straightforward. If I take a print out of this to him and ask him to write that exactly and tell him I will break them up and taper like he wants, then I expect he will do that.
Do you know if these guys will post to the UK?

 

[Sushi]

.... If I take a print out of this to him and ask him to write that exactly and tell him I will break them up and taper like he wants, then I expect he will do that.
Do you know if these guys will post to the UK?

Just a note....most of us have to do our titrate up by our own experience even though knowledgeable docs can give us an idea as to how to do it. I used to raise it by .5 mg, but for some doses I would have to stay there for longer before raising it. I wouldn't raise it until I felt stable at that dose and that varies from person to person.

Sushi

 

[Ema]

Do you know if these guys will post to the UK?

They list shipping rates to the UK, so I'd take that as a positive sign!

You don't need a script to order from them though.

Good luck!!

 

[snowathlete]

They list shipping rates to the UK, so I'd take that as a positive sign!

You don't need a script to order from them though.

Good luck!!

Just tried to order some and get this when I try to do so:
"Sorry this product can not be shipped to your destination country."
That's a shame. I may be able to get some sent to my brother who lived in Texas, and then get him to forward it on to me. Nothing is easy though is it!