19 and a half days in.....

[Fredddie]

Good morning all,

After my positive morning yesterday with deciding to take my total 40mg at 6 am and not split as usual (20MG 6AM 20MG 6PM) due to insomnia this was a BIG mistake. I awoke at 2am in a lot of pain and felt like I was back at square one. My tablets are not coated (Dr says too expensive and they can't give them to me).

So on reflection Don't fix what doesn't need mending, as I was doing so well with my split dose and it appears my tablets only last for around 12hours hence 6am and 6pm.

Then in the afternoon I had a phone call from my Dr to come in for more blood and urine tests as the Rheumatologist wants to rule out GCA and my white blood cell levels are raised. So have just done this - fingers crossed.

Just thought I'd share this with you and how quickly things can change from one post to another in the same day! Obviously part self-inflicted and a good lesson learned.

Thank you for all the Probiotic responses. Have bought some with local honey to take with uncoated Preds.

Please can I ask one more question.

Turmeric - can anyone recommend daily dose and brand. Looked on internet 500mg of curcuminoids daily?

Thanks again.

[SnazzyD]

Sounds like you’re right re breaking and fixing, even if it is recommended that for GCA you take all in one go. Not sure what that’s based on anyway. Do you mean return of GCA symptoms?

It might be worth asking a pharmacist what the relative costs are taking into consideration not taking a PPI as well.

Just a note re the white cell count. If it’s the Neutrophil count that’s up, you’d expect that because Pred stimulates production of them and the Rheumy should know that effect. Perhaps it’s way up, so it’s worth finding out how high is high, especially if they are thinking of using that as evidence of no GCA. There is also this, a bit off piste and a bit of a read but an interesting look at how Neutrophils tie in to GCA.

ahajournals.org/doi/10.1161...

[Fredddie in reply to SnazzyD]

Thank you for your help😊

[Hidden]

Hi Fredddie, you are finding out about the issues of getting things right for you. It can be a trial when they are still running test. When was the blood test done? White blood count and neutrophils have been high and outside the normal range since pred. Its usually expected I think. Hopefully there will be a DX that you can work with asap.

I took tumeric and my tummy didn't like it in capsule form but I have it in stir fried etc 3 to 4 times a week. The Dr is talking rubbish. There are penny's in it and you need to protect your tummy so they need to add ppi to that cost (doesn't have to know you take yog). As snazzy says get the prices of both from the pharmacy and the price of ppi and see what the difference is. There may be searches you can do to find the cost but my mind is blank at the moment. 🤪

[Fredddie in reply to Hidden]

Thanks for that - I'm going to push for it. I have a friendly pharmacist so will check it out.

[scrambledegg]

This isn't exactly a recommendation because I'm not sure how much good it's doing me but it certainly doesn't upset my stomach and I'm scared to stop taking it! I take one capsule of Maximized Turmeric 46x made by Vibrant Health. Each capsule has 500mg turmeric extract with minimum 20% curcuminoids. Hope this helps.

[Hidden]

So sorry you having a bad day Fredddie. I hope you get back into the positive mind frame as soon as possible.

I wanted to help with the turmeric question. I suffered for a long time before receiving a proper diagnosis. I coped with a combination of turmeric and black seed concoctions....(in addition to cupping and accupuncture etc). Both black seed and turmeric are incredibly high in their anti inflammatory properties. Whilst it never completely cured the symptoms, it definitely lowered my ESR to just outside the high end of normal from time to time, giving me some respite.

I played around with fresh turmeric, and using it in powder form in tea. Eventually settling on an encapsulated form from the brand "Natures Blend".

I believe black pepper stimulates the properties of turmeric. The capsules I take contain turmeric, black seed and pepper.

The recommended dose suggests two capsules a day. I take just the one....(I like to supplement it with 3 drops of raw organic black seed oil in half a teaspoon of manuka honey)

I have been taking thyroxine for over 14 years. I have had two reductions in my dosage of thyroxine back to back since taking both supplements (coming down from 175mcg...to 150..and then 125mcg)

Whilst I respect my GPs opinion that this reduction can not be attributed to the supplements for certain...i know they helped me cope with my symptoms for almost 3 years when doctors were unable to do much more than put me on opioids to manage the pain.

Please do look into turmeric and do your research...I firmly believe there in truth in its ability to help.

[Fredddie in reply to Hidden]

Thanks for reply - very good to know.

[Fredddie]

Thank you for your help.

[Marijo1951]

Hello Freddie. I take one capsule every day of Organic Turmeric Curcumin and Organic Black Pepper ''highest potency 600 mg'' made by Nu U Nutrition, a British company. To be honest I don't know if it's doing me any genuine good, but as it's a recognised anti-inflammatory and it's certainly not doing me any harm and doesn't upset my stomach, I'm happy to continue with it.

[Fredddie in reply to Marijo1951]

thank you for your reply.

[DorsetLady PMRGCAuk volunteer]

Hi,

Dr is talking rubbish - not a lot of difference between uncoated Pred + PPI versus Enteric Pred.

Latest NICE costs (June 2019)

This is quoted drug tariff price.

All 28 tablets (except Gastro- Resistant 1mg);

Dose. Plain. Enteric

1mg £0.63 - £1.92 * pack of 30

2.5mg. £1.42# - £0.93 # only one manufacturer of 2.5mg

5mg. £0.74 - £0.94

For Lansoprozole costs are -

15mg - £0.76

30mg - £0.76

For Omeprazole costs are -

10mg - £0.83

20mg - £0.83

[Fredddie in reply to DorsetLady]

Hi, thank you so much for the info. I wonder why she said that if there’s not a lot of difference. If coated I wouldn’t require Omoprazole is that correct? If so would bring cost down more. I will put my case forward again at next appt.

[DorsetLady PMRGCAuk volunteer in reply to Fredddie]

You’re correct - if coated, no need for a PPI.

[piglette in reply to Fredddie]

I think originally the coated was a lot more expensive, but it isn’t any more, but some doctors have not rechecked.

[PMRpro Ambassador in reply to Fredddie]

Possibly because when the prescription of enteric coated pred was discouraged there WAS a bit difference. However, shortly afterwards the manufacturers put up the price of plain pred so the differential was not so great. But above all - they reduce a layer of potential adverse effects - including increasing the possibility of osteoporosis.

[Fredddie]

Thanks for info. I am going to take it up with the Practice Manager.

[LWNE]

Hello - I buy Elixirvit brand curcuminoid capsules with Vit D3 from Amazon - about £12 for a months supply - think these are helping.

[Fredddie in reply to LWNE]

Thanks for tip