PMRGCAuk
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PREDNISONE AND ASPIRIN

I have had PMR and GCA for 8 years and am now down to 7 mg of Prednisone , trying to reduce but without success. However in March 2017 I was diagnosed with Polycythemia and was put on 75 mg of Aspirin and 500 mg of Hydroxycarbamide. , I have just read on this forum that Aspirin and Prednisone should not be given together because of drug interaction. I also take Ranitidine, Curcumin, Serrapeptase and Thymo-Lyph. The last item I have been given by a Health Practitioner for my compromised immune system. However I am very concerned about the interaction of Aspirin and Pred. I queried this with my Haematologist when first diagnosed with Polycythemia but she said it was ok. However since I have started taking the two drugs together I have had various unidentified symptoms, eg extreme fatigue, feeling sick, especially in the mornings and intermittent headaches, none of these were present until recently. I have asked the pharmacist who was very non-commital and said I should query it with my consultant. I am obviously very concerned about this interaction. Some reassurance from this site would be great. Happy New Year everyone.

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Hi

I took aspirin long before GCA, all through my Pred journey and still take it now- no problem whatsoever! Mine is 75mg same as yours, so not sure where the interaction problem came from.

If I recall, it used to be recommended for GCA patients alongside Pred, but now each patient is assessed before prescribing.

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Many thanks for reply. I will have to investigate further regarding my new symptoms.

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If you are having any side effects with medication , your blood cells are rejecting this medication,. Life is in the the blood. Is the risk worth the returns, you are experiencing. God gave us smart blood cells . I have been diagnose with Polymyalgia , I began taking 15mg one month lower 12 mg, I did not like the side effects, my sight and heart, weight , are compromised I asked to be remove from this medication, it was lowered and I came off the drug . I have changed my diet to clean foods, that a free inflammatory and I'm taking high quality supplements that encourages the cells to communicate , and recently I began taking CBD OIL . CBD oil is natural the THC is removed so you wil not get any side effects . This is the age of information, research the benefits taking CBD OIL, there are lots of benefits and don't listen to scaremongering . CBD oil is safe. Yes I experience benefits in taking CBD OIL , CBD oil has to be build up, it's not the magic bullet like pregnesolene. There are YouTube videos to help you.

Don't hand your health over to the lowest bidder. Learn to care for your health, it's your well spring for life.

Deut1:29-30 I gave you seed bearing plant ( where are the seed in our lemon,limes, grapes, today) seed bearing fruits and green leaves ( herbs, cannibis ?) and it is good for you all our foods to day are GMO ( God Move Over) our tomatoes are gassed to turn red. All veg and fruits for not rot, some have everlasting life , some dehydrate into rocks . Scientist have discovered they can remove the 68 trace minerals that is needed to grow our foods and replace only 3 NPK, for yield crop So they have sacrifice our nutrient for yield. Our blood cells are starving for food. They don't recognised what we eat as food for them to give us the energy we need. Hence the reason you must take charge of your health. All our foods are messed up and its beginning in our digestive system. Learn to shop smart , food is medicine , detoxification is key. Eliminate the toxins

Doctors don't have the answer to today's diseases and its all in our foods. And affecting our digestive system . So grow what you can and take charge of your health.

.

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Hi Amy18. Thank you for your reply. I grow all my own vegetables organically and have an anti-inflammatory diet without Dairy and Wheat, so I thinki I am doing all the right things.

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Heather, unless there are any contraindications for the patient, aspirin has historically been recommended alongside Prednisolone especially in the case of GCA, and those people I know who have taken it have done so without any discernible problem. Having said that, it is true that both Pred and aspirin can have a blood thinning effect so this could present a problem for those who are vulnerable in this area. I would seek out another pharmacist who should go through all your medications to check for any contraindications between your medicines, including herbal supplements. BUT firstly, if it were me I would see a GP for blood tests, etc, to rule out anything untoward that is causing your new symptoms. Having said that, nausea/sickness were among my symptoms at GCA diagnosis - I'm thinking that an increase in steroid dose may be all that you need to relieve these latest symptoms.

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Many thanks Celtic. Obviously I am reluctant to increase after trying to come off it at the advice of the endocrinologist but if it's going to relieve the symptoms I'll give it a go. What level would you suggest I increase to?

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I have asked GP but he just shrugged his shoulders and said he didn't know. My blood tests showed ESR 21 and CRP 2.

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It's difficult for anyone to advise 're upping pred but I believe in agreement with Dr you should consider last dose that controlled symptoms.

Regarding aspirin. I have diabetes and it was standard practice, when I was dx in 99/00ish, that aspirin at 75mg was prescribed with one of the prazole family. When I was dx PMR Dr took me off it because recent research showed that it was of little to no benefit to women who have not experienced heart episode. For men it's different. Can't remember research but might be found on Google.

If your pharmacist is non committal see another one. Mine won't let me buy anything that is contraindicated to current meds or diabetes. Of course I could cheat and low to another pharmacist but have resisted lol.

I tried turmeric capsules and it made me nauseous and I had stomach pain. I know people in Asia mix with warm milk to get anti inflammatory effect and last year it was suggested it be mixed with pepperine (?). I stuck to having in food form now.

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Thanks for your reply. I have been taking turmeric for a long time and before new symptoms, without any side effects.

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I take Turmeric too, and recently stopped it because I thought it did nothing, but obviously it must have had some effect because I then got nausea and more pain until I re started. So if you have stopped the Turmeric maybe that was it?

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I have been taking Turmeric since March when I was diagnosed with Polycythemia and it wasn't until end of October that I began feeling nauseous together with the other symptoms. Many thanks for your comments.

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Heather, not being a medic I am not in a position to go against the advice of an endocrinologist, but if your symptoms are due to flaring GCA then an increase in steroid dose may be the only resource to relieve those symptoms. You are around the dose of steroid that the body makes naturally and therefore it isn't unusual to be presented with a stumbling block at this level. As you reduce around these doses, your body has to get back to producing it's natural supply of steroid (cortisol) that has been suppressed by the artificial steroid and this takes time. Whilst reducing from this point, if your body has not 'caught up' with producing this natural supply, then it will have a shortfall, thus leading to returning symptoms. If it were me, I would consider increasing to 10mg to see if it helps, but your situation is complicated with problems/medications other than PMR/GCA/steroids going on and I think you should seek the advice of your rheumatologist. Meanwhile, if you have any problems with your vision, go straight to A&E/Emergency Room for advice. Whereabouts are you, Heather, just in case we can recommend a good rheumatologist in your area?

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Just read your post with the blood test results, Heather. Are you someone who had raised markers of inflammation at diagnosis? Those are good readings but sometimes it takes a while for blood tests results to 'catch up' with symptoms, with some patients never presenting with raised markers in spite of having PMR/GCA.

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My readings on diagnosis 8 years ago were ESR 127 CRP 72. My norm I understand should be ESR 12 CRP 2

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Hi Celtic. I am in Kent. II don't have a rheumatologist I was referred to the Endo as a one off by my Haematologist. I agree I have a very complicated medical history but what annoys me is that the departments in the NHS don't talk to one another.

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Heather, there is a highly recommended rheumatologist in Chertsey - Dr Rod Hughes at St Peter’s Hospital. A bit of a journey for you but others travel from as far afield as Kent to see him, he is that good. He sees both private and NHS patients. With GCA, you should be under a rheumatologist. If you are interested I can let you have contact details.

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Thanks Celtic that would be useful. When I asked my GP to refer me sometime ago his reply was what do you think a rheumatologist can do that I can't!! I gave him a copy of the report as recommended by PRMPRO and he said he didn't have time to read it so I wasn't referred.

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Heather, as well as finding a good rheumatologist, I think I would be seeking out a different GP, at least one who has more respect for his patients, let alone his superiors! We have in the past suggested that people stick like glue to their caring-sounding doctors, but I doubt anyone will be advising you to do the same!

If you do decide to see Dr Hughes at Chertsey, you will find him both caring and knowledgeable. He was my second go-to rheumy, when the first one failed abysmally. Dr Hughes is also behind the setting up of the local Surrey support group under the Charity, PMRGCAuk. He is mentor to the group, and is involved in research into these conditions. He is presently involved in a Retrospective Study by the University of Leeds into the causes of GCA and PMR, and is looking for patients with GCA, with or without PMR, who might like to take part. If you are interested, just a one-off visit for a blood test and to complete a Consent Form is all that is required.

Dr Hughes' NHS Secretary is Nicky on 01932 722487, and his Private Secretary is Jody on 01932 877831. There is also a rheumatology nurse helpline available for rheumy patients.

In case you aren't already aware, there are also support groups and meet-ups in various parts of Kent - you will find them all on the following link:

pmrgca.co.uk/groups/

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Many thanks for all your information. I will certainly give him a call.

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" he said he didn't have time to read it so I wasn't referred."

An excellent example of what a rheumy can do that he can't: keep up to date.

It is your RIGHT to see a specialist - and it is also your legal right in the NHS in England to see the one you wish to see. If you can and are willing to travel to Chertsey - you can see Rod Hughes. You have a complex medical history - that a GP cannot possibly keep with. Whether he agrees or not.

And I agree with everything Celtic has just written and posted while i was writing...

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What sort of health practitioner?

The low dose aspirin is probably fine - the problem is with normal pain-relief doses of all NSAIDs which are drugs which can cause bleeding and gastric irritation. You are also on ranitidine so you have some protection. Low dose aspirin has been recommended in GCA for some years although that will be removed from the new guidelines as for GCA alone there is no indication that the benefits outweight the downsides. However, where it is used for other reason that won't be discouraged. I would be far more concerned about your supplements to be honest.

Do you take the curcumin, serrapeptase and thymo-lymph on advice from a mainstream medical practitioner or an alternative therapist? I'm also not clear if you mean the symptoms you complain about have started since taking the thymo-lymph or something else?

There is a thread about serrapeptase started this week I think - and the general feeling seems to be it isn't worth it. Taking curcumin as supplements can have unpleasant side effects because of the dose, whereas using turmeric in cooking is less of a problem. I can't find any objective articles about thymo-lymph. You are taking 3 different supplements that are not subject to testing and monitoring before use. Two medications or supplements can interact - you are taking 6 different substances, 3 of them untested - so who knows what interactions there may be? Other thymo- drugs cause nausea and so does curcumin. While any one on its own may be OK, all put together they may not be.

Your ESR does seem to be on the rise - since you say your normal is 12 and it is now 21. That needs checking again to see if the rising trend continues. If it is it might suggest that your pred dose is too small.

But as Celtic has said, you need to be under a rheumatologist for GCA - but I know that Kent is a bit of a desert for good rheumies!

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It was in desperation after reading an article on Healthunlocked that I went to see Ruth Tophill who is here in Maidstone. She uses a system which is similar to the Vega Testing which is used widely in Germany. She told me that my immune system was badly compromised (I already knew that) and also that I had an infection (which one she was unable to tell). There were a few food intolerences which I knew about. She recommended the Thymo-Lyph. The Turmeric and Serrapeptase were recommended by a friend of mine who is fighting bowel cancer without chemo. I have never been one for trying alternatives, especially since going on Pred but when there is no other help available one will try anything. I was doing really well before Polycythaemia was diagnosed but then further drugs seemed to have tipped the balance of my system once again. That was 9 months ago so I would have thought that things would hae improved by now but instead they are getting worse. However, I will stop the alternatives and see what happens. By original query was about Aspirin which everyone has convinced me that with GCA I should take. It was my GP who told me to stop it several years ago. Many thanks for your comments.

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Hi Heather, I am in Kent, near Cranbrook. I have seen 2 local Rheumy's and found them appalling! I now go to see Dr. Hughes as recommended above and really rate him highly. I have been involved in the Maidstone meet ups which meet on the 4th Monday, but, unfortunately won't make any in this coming term as I am starting a pottery course which clashes. Nevertheless, I can recommend it as a way to feel less isolated and much better informed! Details on the PMRGCAUK website. If you want any more local info. do send me a message.

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Thanks Suzy. I have been to a few of the Maidstone meets but unfortunately they clash for me also with my nordic walking group. I agree that the rheumys in Maidstone are rubbish. If you could let me know the contact details of Dr Hughes I will contact him

I'm assuming I will have to see him privately.

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drrahughesrheumatologyltd.com/

Not necessarily - he also does NHS and it seems, according to someone on the forum, that the wait is not horrendous. Private is usually quicker though. It is your legal right in England to see who you wish to - and he is known to see you privately and transfer you to his NHS list.

I think Celtic put his phone nos up somewhere too - yes, further up this page, Phone nos for Nicky the NHS sec and Jody the private one.

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Many thanks for info. Yes I have found Dr Hughes details in Celtic's msg. I will be ringing him tomorrow.

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Many thanks to everyone for your replies and useful information. What an amazing forum. I feel as though there is light at the end of the tunnel.

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Have taken 75mg Aspirin for years, before PMR/GCA and through the 17yrs on Pred without any problem. It was first prescribed when a minor heart problem was detected and I still take it alongside pred and beta blockers - for SVT - every morning.

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Maybe speak with your GP, these symptoms may not be directly due to the aspirin and pred. My experience is that as I have a coronary stent in, I have to take Aspirin. I’m also on a blood thinner Apixaban, because of atrial flutter. And of course Prednisolone now down to 5mg for the PMR.

I take them all am, and don’t have any nausea, just the fatigue that pmr gives us.

I also take Omeprozole 200 mg, first thing before the other meds, to protect my stomach, I did have a spell of heartburn, when on higher dose of pred.

Do hope you get answers soon, nausea is horrible I think. Best wishes for 2018

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Unfortunately my GP just shrugged his shoulders and said he didn't know. I have now been recommended a very good Rheumatologist so hopefully he will be able to help. Many thanks for your reply.

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Heather, do hope you get an appt. soon, best wishes, let us know how you get on.

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All I can say is that my experience of being on 325 mg of aspirin at the same time I was taking prednisone did not cause me any issues. I was taking them at the same time for only 3 months. So that was a very short duration. I do want to say that I'm very disappointed in your pharmacist not answering your question. After all it's his or hers job to know the interactions of medication.

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