Newly Diagnosed

My Story . Had flu symptoms 6 weeks ago lucky a gp ran some blood test! Recalled as ear levels were 63! Admitted to Hospital put in 80mg Pred. Discharged on the Monday afternoon the following day returned to A n E as I had Dvt symptoms Sure enough I had a dvt! I gather the dvt was caused by being on 5 days of High Steriods, hence, I said I'm not taking them, until if had been confirmed as a diagnosis which is finally was

by Ultra sound and my next ear had not reduced in fact went up to 83! Now taking 40mg. But scared another dvt night happen ... yes, a dvd is a rare Steroid Risk.

Hate how I feel .. giddy .. headaches .. tinnitus .. night sweats .. not had a good sleep for weeks .. with worry about the weight gain immensely ... not sure why my symptoms have not called down ? Not seeing Rheumatology until Jan ..

Two weeks before this started I fell over .. nothing broken, but body took a big jolt down 2 large steps .. I'm sure this was the trigger? Any feedback how to cope with this GCA never heard of it before, says it's rare? I'm trying Apple Cider Vinager and a anti inflammatory diet .. Will Try Anything !

[PMRpro Ambassador]

The only thing that will deal with GCA is corticosteroids - the diet may help you feel better but I'm afraid it won't do much against the GCA.

I assume you have been put onto medication for the DVT? The hospital may have jumped to the conclusion it is due to the high dose steroids - but in fact there is an increased risk of DVT and PE with various autoimmune disorders as well:

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

If the headaches and tinnitus plus other GCA symptoms have not improved then the likelihood is that you are not on a high enough dose of pred - 40mg is actually the bottom end of the range for GCA.

Cutting carbohydrate in your diet drastically will help with weight gain - but let's face it, weight gain is a minor problem compared with the risks of GCA without pred such as loss of vision which is a possibility.

[Hidden in reply to PMRpro]

Thanking you for your prompt reply. yes, I'm now on Ribroxaban Blood thinging medication 20mgs now. Did also, think as still have sumptoms not on a night enough does ... Rheumatolpgist said to start at this mg as I don't have any eye disturbances.

May increase doesage myself tommrow of not feeling any better.

Finding this all overwhelming, but accepting more as the days pass.

[PMRpro Ambassador in reply to Hidden]

I think my husband is on rivaroxaban, I'm on dabigatran. He has protein C deficiency - have you been checked for that? I have atrial fibrillation. They are all better/easier than warfarin!

It's all a roundabout that you can't keep up with to start - but it does improve, honestly.

[Hidden]

.. guess I'm expecting too much too soon. will try and stop stressing and googling! Thank you

[Hidden in reply to Hidden]

It is very early days for you and once you have found right dose to control inflammation hopefully you will feel better as you reduce the dose. Low carb diet will help with weight but will also steady spikes in blood sugar that will contribute to feeling unwell. At present you just need to look after yourself and let pred do it job. It's very hard learning to be patient with your body and yourself 🌻

[DorsetLady PMRGCAuk volunteer]

Hi Inde,

Like you I started at 80mg, but fortunately didn’t get as many problems, apart from the sleeplessness, which does go after a while, but a sleeping tablet every 4th or 5th night did get me through the worst.

Have a read of the attached, may help you understand your illness a little better

healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

Thank you kindly your link was helpful and informative .. I'm all new to this rare (well so I'm told condition) so I'm taking all help and advise on board. Felt alone last week and upset as drs not said much to me other than take high dose steriods .. so being here has helped me already .. taking does help

[SnazzyD in reply to Hidden]

Same here! At my Rheumy appointment the day after A&E I was asked what I understood of GCA. I parroted the definition but that was all because other than that I knew nothing. The letter to the GP said I had “an excellent understanding of GCA”! I was given the reduction plan and told to go forth and wait for my biopsy. Other than that, NOT A SAUSAGE! I went home in shock, buzzing on 60mg. I then found this site and my education began. The first couple of months are the hardest getting used to Pred, the new way of life and the feeling nobody gets it. Use this forum for a moaning board too.

[PMRJ]

So sorry to hear of your troubles and Pain and diagnosis. I had a crazy fall out of nowhere just prior to my diagnosis of PMR. Truly, truly, changing my diet to anti-inflammatory foods after a year of fatigue/pain/limited mobility and GCA biopsy etc. the diet HELPED, with pain and fatigue and mobility. I have stuck with the diet. For almost a year my bloods have been normal!!! The prednisone tapers from 60 mg to now on 4 mg at 3 years into this. The withdrawal tapers have been very difficult and very slow due to withdrawal pain. Please be encouraged about the food. There is a LOT of medical evidence about anti-inflammatory foods. Problem is my docs don't believe the diet can do all that it has done for my body. Soooo I don't tell them anymore and just keep it up and move forward with healing. I am happy to provide info re: accessing info about foods that hurt and foods that help. Quick summary....sugar (in most any form) FEEDS inflammation). With every positive thought for your healing and freedom from pain as quickly as possible. PMRJ

[Hidden in reply to PMRJ]

Thank you for your response, I'm a believer in .. we are what we eat .. and having a daughter who has had breast ca. Know sugar Is a Big baddie and fuels inflammation. any help with the good and the bad foods please do let me know .. I do realise we cannot heal ourselves alone with diet, my doctor even said "No you can't nothing will help" food wise .. so like you will not say im trying the inflammation diet.

[PMRpro Ambassador in reply to Hidden]

Strangely - Prof Sarah Mackie said to me once "we've wondered about diet" when I had been telling her about our advice on the forums to CUT CARBS and how it helps avoid weight gain. But a lot of people say that when they have strayed and eaten sugar/carbs they know about it afterwards.

Must talk to her about it...

[PMRJ in reply to Hidden]

Dear one,

Unfortunately docs have minimal education in nutrition and diet. Our 'problem PMR is essentially an autoimmune disease (which you already know) From the book "Autoimmune Fix" by Tom O'Bryan, DC, CCN "when you remove the 3 most common inflammatory food at once--gluten, dairy and sugar---both your digestive and immune systems have a chance to calm down, heal and rest." "...by eliminating the 3 primary triggers, gluten, sugar & dairy more than 80 % of my patients feel dramatically better and begin reversing the autoimmune cascade." p. 157 If you wonder about protein and other nutrition info Dr. Michael Greger offers FREE website nutritionfacts.org I am now down to 4mg heading for 3mg. Meats and chicken (even organic) can add to inflammation. My health is awesome since eating foods from Mother Earth. Down 40lb! in 2 years. Best of luck....Our health is worth the challenges of changes!! PMRJ

[PMRpro Ambassador in reply to PMRJ]

"My health is awesome since eating foods from Mother Earth."

Is that an ad for the company or is there something deeper?

[PMRJ in reply to PMRpro]

Mother Earth is is whole foods (not the company) Plant based eating.....UN processed foods. Can be frozen veggies and fruits. Is NOT required to be Organic. Went to health center in California recommended friend who almost died after surgery, but knocked out his inflammatory bowel disease WITHOUT prednisone, but by completely changing his diet to the goodies that from Mother Earth. Science based info FREE about nutrition at nutritionfacts.org from MD Michael Greger. Thank you for listening to my 'band wagon' pitch for healing. I am not turning back....I know too much now. Blessings may Health and Healing be your gift of the New Year. PMRJ

[PMRpro Ambassador in reply to PMRJ]

Thank you - not for me though since vegan plus gluten-free is a bit limiting. Especially when you live in italy!! My granddaughter has improved her severe asthma with a vegan diet so I don't disagree.