Diverticulitis and steroids: So now another hurdle... - PMRGCAuk

PMRGCAuk

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Diverticulitis and steroids

26 Replies

So now another hurdle....first PMR diagnosed last Jan 2018. Now toggling between 9.5 and 10 mg. Then Lyme disease contracted and treated Aug 3018. Now diagnosed with diverticulitis,which I learned on the Mayo Clinic site candy be caused by steroid use. Being treated with a ten day 2 different type antibiotics. Has anyone else in this wonderful forum of kindred spirits have any insights into my latest dilemma?

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26 Replies

Sorry, if course, meant Aug 2018 unless I time travel

Telian profile image
Telian in reply to

We can do anything on steroids!

PMRpro profile image
PMRproAmbassador

Are you sure the Lyme post-dated the PMR?

in reply to PMRpro

The Lyme, 8/2018, postdated the PMR, 1/2018 (diagnosed). Diverticulitis, 2/2019.

PMRpro profile image
PMRproAmbassador in reply to

Not the diagnosis - the bite that triggered the Lyme ...

in reply to PMRpro

It was caught I'm pretty sure very early as that is what the blood test indicate. So I was probably bit just before I went to the doctor and had the red circle behind my left knee. They also did a second blood test after I finished my treatment and said there was no trace of it in my blood.

PMRpro profile image
PMRproAmbassador in reply to

I only ask as PMR symptoms and Lyme's disease symptoms can be very similar.

in reply to PMRpro

I understand. In fact when I first complained to my doctor in December 2017 about the joint pain, he started me with the treatment for Lyme even before my blood test results came back negative for

Lyme.....but of course at that juncture he had no clue what I had so have me pain pills. As we know that didn't work. I did a little research my self and came up with PMR. When I approached him with my suspicion, he said I was "too old" for that. I fired him, found a rheumatologist that confirmed my diagnosis.

But still wondering....has anyone ever heard of steroids causing diverticulosis as the Mayo clinic seems to indicate?

PMRpro profile image
PMRproAmbassador in reply to

"Too old"????????? I've heard it all now! It's usually "you aren't old enough..." You are only too old when you are dead...

I suspect the Mayo article may be confusing. Corticosteroids are believed to be implicated in perforation in diverticular disease.

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

But I don't think they necessarily CAUSE it - they mask the severity of the symptoms in diverticular disease because they reduce the inflammation so it isn't realised how bad it is until there is a perforation. At first sight it looks as if the risk is higher in patients who have been on steroids, and that they caused the problem. There is in fact a paper to be found that suggests that steroids are protective - but it is Chinese and a single self-publication as far as I can see.

As we age we are increasingly likely to develop diverticulae in the abdominal wall. If they become inflamed we develop diverticulitis and the diverticulae may become infected and even form pus if it is not recognised. Being on steroids probably reduces the pain due to the inflammation until it becomes really severe and perforates.

in reply to PMRpro

Thank you pmrpro...you are a wealth of knowledge.

As a side note to the Dr who said I was too old (I was 69). My 17 year old grandson went to that same Dr with a rash. The Dr said he had scabies. My grandson (God love his tenacity) said to the Dr it looked like impetigo to him and the Dr after looking in his computer concurred my grandsons diagnosis......you really do have be assertive and proactive in your own health. Thanks again

Cally55 profile image
Cally55 in reply to PMRpro

I seem to be on increasingly thin ice! I was going to say that the steroids had made my diverticulitis much better, but it seems this could be a fools paradise! How do I detect a severe problem with it when the steroids and the codeine I take for my back mask any symptoms so well! I do still keep up with my "diverticulitis diet" even though I had noticed that I could eat things that used to cause grief.

Now I see why the doctors are so keen to get me off steroids, it would help if they had explained their thinking.

PMRpro profile image
PMRproAmbassador in reply to Cally55

I think the point is that using steroids DOES improve the symptoms because it reduces the inflammation and the study I mentioned did find that in the Asian population they looked at, disagreeing with the previous study that said it made it worse:

journals.plos.org/plosone/a...

I suspect the truth is that the pred masks the development of diverticulitis so closer monitoring of the patients may be required - and the patient does need to have it explained that just because their symptoms are better it doesn't mean it has gone away so diet remains important and if they have any symptoms they should get them checked quickly. But I have to ask - surely there is something other than codeine since that is going to aggravate constipation and increase the risk?

It's all very well saying you have to get off pred - but you have problems with another illness instead!

Blackcat1M profile image
Blackcat1M

Hi I have had diverticulitis for 15 years round about, and I take acidophilus and make sure you don't get constipated. I am on at present time. 7.5 mg pred.

I try and eat well , not a lot of processed food.

I have had pmr for five years and not had any major flares with diverticulitis .

Hope this helps I am sure you will get more help from this forum than I can give. Good luck

in reply to Blackcat1M

Thank you blackcat but what is acidophilus?

ClarkB profile image
ClarkB

I am only able to comment on my similar experiences, as opposed to providing any expertise, but fortunately there are others who are a godsend in providing suggestions and advice.

My PMR was also diagnosed in Jan 2018, starting on 20mg and now on 2.5. A rocky road, and never painfree whether I increase or lower the dose! I also have diverticulitis, and like PMR had never heard of it until I was an emergency case in hospital in 2013. I could even have gone through the diverticulosis stage without realising it. I managed to avoid an operation, due to treatments in hospital.

Flare ups (as opposed to PMR flare ups!) showed up as weakness, dizziness, shaky and feeling generally unwell. I recently had these again, which I attributed to diverticulitis. When I came out of hospital my doctor suggested taking Symprove (a live and active water based bacteria) as he said that other patients found it beneficial . I have taken it since 2013, but it’s not available on the NHS! Mango flavour is not unpleasant and keeps in the fridge. The downside is that it’s very expensive, but I found it helps me.

Since taking steroids symptoms / flares have been recurring , and I always wondered if there was a connection between PMR and diverticulitis. Another problem is that with more than one health issue, (I also have osteoporosis) it’s difficult to work out which one is causing the problem! There are also different and sometimes conflicting diets which doesn’t help!

As for Lyme disease... one thing I don’t have, but I try to be extra careful when walking through bracken etc and avoid the areas where there are warnings of ticks, ever since a friend was diagnosed.

Am a kindred spirit, but not sure if I have provided any insights!

ClarkB profile image
ClarkB

Since replying to your post, I realise that you live in USA. Why do I assume everyone lives just down the road?! Symprove which works for me, isn’t available there, but there is probably something equivalent.

in reply to ClarkB

Thank you clarkb. You are right about diet. It appears the diet that is beneficial for PMR.....contradicts the diet for diverticulitis. I guess it's to the baby food isle for me.

ClarkB profile image
ClarkB in reply to

Sauerkraut and kimchi for me - diverticulitis. I eat depending on the prevalent problem! Sometimes I ignore the lot and eat what I want, as in live now, pay later!

Linny3 profile image
Linny3 in reply to ClarkB

It can be purchased on Amazon

in reply to Linny3

Thanks much....I looked it up....worth a try

Judigardener profile image
Judigardener

Hello. Yes Me too. I have diverticulitis on and off and Shingles for the last 20 years too. Joys of my stressful life! Good luck.

in reply to Judigardener

And PMR?

Judigardener profile image
Judigardener in reply to

Yes PMR for 5.6 years. Up and down on Pred. Currently on 9mg.

in reply to Judigardener

Wow! You have had a lot thrown at you too? How do you cope with it all?

Judigardener profile image
Judigardener

With great difficulty at times!

phebamom profile image
phebamom

Lyme disease from a tick bite in 1997 started all of my illness. Antibiotics need to be long term, not a couple of weeks. Lyme reproduction is on a 30 day cycle, so two or three weeks won't begin to cure.

I am seeing Lyme doctor next week. Just sick of this prednisone roller coaster. Also, Actemra was a disaster, causing bronchitis, and neuropathy, which I hope gets better off drug.

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