increasing pred with infection

[hwigston]

I have GCA and after six years following the slow method I managed to get down to 6 mg. In April I was hit by a wheelchair in the back of my left leg which left quite a serious injury. Within 2 days it became infected and GP gave me antibiotics. Two months on and 3 lots of antibiotics it is still infected. I have been feeling extremely rough with it and suggested to my GP that I increase my Pred for a while until my leg is clear of the infection and I feel better. She is very reluctant to do this. She is keen for me to get off Pred asap because I have been on it for 6 years and it may be masking other things which could be going on in my body. I disagree and feel that increasing it to 7 mg for a week would make me feel stronger and possibly help to get rid of the infection. Anyone's advice would be welcome.

[Celtic PMRGCAuk volunteer]

hwigston, what a horrid time it sounds as though you have been having following your leg injury. It isn't surprising that you are feeling so poorly trying to recover from that, not to mention the three rounds of antibiotics.

I can understand that if you aren't experiencing a return of any actual GCA symptoms your GP feels reluctant to increase your steroid dose. And, yes, steroids can mask other things going on but I would have thought that would be more likely at the higher doses rather than the 6mg you are on at present. But I also think going with our gut instinct is important - we know our bodies best! So, if you feel inclined to increase to 7mg for a week, the only way to find out if that makes you feel any better is to try it - nothing ventured, nothing gained!

Have those treating your leg infection tried using medical grade Manuka honey wound dressings? If not, definitely worth a try. Some years ago, a friend persuaded a community nurse to try it on her husband's long-term infected leg ulcer and it proved very successful.

I do hope you will soon start to feel better - do keep in touch and let us know how you get on.

[DorsetLady PMRGCAuk volunteer]

Hi hwigson,

Would agree with Celtic, after 6 years you know your GCA better than anyone. Can understand your GP reticence to upping the dose, but a week here or there is not a lot in the great scheme of things. I've just done the same thing, because I didn't feel quite right and my bloods were slightly above their usual parameters.

After a long time on Pred you just get a gut feeling of what's best for you, and nobody is going to increase just for the hell of it - there needs to be a good reason! And whilst I would not advocate disobeying the GP, mine always says 'the patient knows their own body best, so listen to it'.

Hope you soon feel better.

[hwigston]

Many thanks for your replies. I will certainly let you know how I get on. As regards the Manuka honey dressings my medical practice are not allowed to supply them. However, I am on silver dressings which at present appear to be working, plus a stronger antibiotic.

[jinasc]

You can buy Manuka Honey Cream ( small tube about £12) from H&B. This was developed by Addenbrookes for the treatment of MRSA in open wounds.

Your practice may also be able to supply and use Green Lipped Mussel ointment. Another developed in the UK and this is used by our District Nurses for wounds and varicose vein ulcers that prove extremely difficutl to heal.

The downside with anti-biotics, is that they kill all bacteria, good, bad and indifferent, so your good bacteria are not around to help out.

When you finish the course of anti-biotics, get some Organic Pro-biotic Yoghurt, which contains L.Acidopolous and that will help you to re-populate your body with goodies.

I only found out about this earlier this year, when after an operation (long story) I was really struggling - a Consultant I saw when I was hurried to the n Acute Medical Emergency Admission, explained the major problem was re-colonising the gut and body. He told me to try VSL+3, this is not available on the NHS and is expensive.

I asked PMRpro to look into it and it is made in Italy and each sachet contains 450 billion bacteria, all the goodies, including L.Acidoplous which was the main ingredient.

I decided to give it a go - to hell with cost - it worked quickly and was worth every penny. Then I looked for a yoghurt with L.Acidopolous in it - Bingo Yeo Valley. I now take it every day with Manuka Honey, I teaspoonful, which is also a natural anti-biotic, if you do decide to try it - make sure it has UMF on the label and try and buy the highest + number.

Now the GP being keen to get you off pred when you have been on it for 6 years, has she organised that you see an Endochronologist for an Synathecen (spelling?) Test (ACTH) to see if your adrenal glands have woken up and started working again - I bet not. So insist on the Acth test, an adrenal crisis is the last thing you need.

Follow this link to the Guidelines on the Diagnosis and Treatment of GCA.

pmr-gca-northeast.org.uk/as...

You will find this paragraph

" Patients should have a chest radiograph every 2 years to monitor for aortic aneurysm. If large-vessel involvement is suspected, this may need supplementation with echocardiography or other imaging."

My Consultant arranged for this to be done every two years.

You could download, print and take them and ask if they have ever read it.

Finally like Celtic (well not quite, I never had PMR and Celtic did) and we went into remission about the same time) no I would not drop at all, in fact I would be inclined to raise it more than Celtic suggests, my mantra, hit it hard and hit it fast so try 10mg for two or three days and then drop by 1mg every week until you are back to your 7mg and

I had GCA for 5 years and have now been in remission for nearly 7 years. I was very lucky I had a Consultant and GPs who were excellent and we discussed everything and worked as a team and they both had read the Guidelines on PMR and GCA issued by the BSR. Knowledge is Powe.

I wish you well and strength - you know your body better than anyone else and Knowledge is Power, used in the right way.

[hwigston]

Hi Sambucca. Many thanks for your reply. Because my medical practice are not allowed to purchase honey dressings, I have purchased a tube myself, which seems to be helping the healing process much faster than the silver dressings. As regards the yoghurt with lactobacillus acidophilus unfortunately I have a dairy intolerance so instead I take a acidophilus supplement and have done since starting pred. I have had the synacthen test which was requested by my rheumatologist and I have adrenal insufficiency, hence the reason why I was so annoyed when my GP was insistent that I come off pred as quickly as possible. She did not understand that my adrenals are still asleep. However two days ago I went to 7 mg and what a difference 1 mg made. I feel like a new person the best I have felt for weeks and I am going to stay on 7 mg until my leg has healed and then I will slowly reduce to 6 mg. Incidentally I am due for another synacthen test in a few weeks time, so it will be interesting to see the result this time. Many thanks once again, its reassuring to know that I am on the right track.

[PMRpro Ambassador in reply to hwigston]

As I have always understood it - if you have adrenal insufficiency diagnosed with a synacthen test then that was a hammer to see if your adrenals are able to produce cortisol at all. As such, you should be under an endocrinologist - not a GP who patently obviously doesn't get it - neither PMR nor the adrenal problem.

[hwigston]

Hi PMRpro. I am under an endocrinologist who I see again in September, but as you rightly said my GP just does not understand PMR/GCA or the fact that I have adrenal insufficiency, and like the majority of GPs, her only concern is to get me off Pred asap. However, the view of the endocrinologist is for me to reduce when I feel ready to do so. Last Friday I went to Kings College Hospital where I had an IV of antibiotics and increased my Pred to 7 mg, which the Consultant said was a good idea, in fact he suggested increasing it to 10 mg for a week, but I felt so much better that I have left it at 7 mg and thank goodness my wounds are healing and I feel so much better. I can understand my GPs concern about being on Pred because since April I have lost 5 kg in weight. I have had CT scans with contrast and await the results.