Working with a functional medicine doctor

[BeansHB]

Greetings fellow PRM-GCA folks! I'm wondering if anyone on this site is currently working with a "functional medicine" or "integrative medicine" doctor to treat the condition. My rheumatologist is a highly qualified, and good, conventional doctor, but she doesn't explore underlying conditions or causes that lead to auto-immunity. Her focus is simply on managing symptoms. When I was diagnosed with Lupus about 10 years ago, she kept pushing me to take meds that I didn't want to take. I was fortunate enough to work with an acupuncturist who supported dietary and lifestyle changes, that eventually led to a return to health (complete with normal labs). Now, with a new set of diseases, I'd like to find someone who can provide similar support. I'd be interested in any experiences folks have had.

[MhairiP]

A very interesting question! I have found that most conventional doctors just look at the symptoms rather than the causes; and they push you to take medication willy-nilly. I reached the age of 60 without needing any medication whatsoever, but now here I am on steroids, and have just been told I've got osteoporosis, so that could lead to more horrible meds!

Since being diagnosed with PMR 3 months ago, I have used a nutritional therapist. I haven't decided yet what to do about the osteoporosis - I'm still researching my options.

[BeansHB in reply to MhairiP]

Ugh. I'm sorry to hear about your osteoporosis. It's one of the things I fear about using predinsone. I wish you the best in your research about what steps to take to combat it. As for me, I'm committed to finding another way to address PRM-GCA. I don't think treating symptoms is the way to go long-term - though I am extremely grateful to be able to move my neck, shoulders, and hips again.

[PMRpro Ambassador in reply to BeansHB]

At my last dexascan I had been on pred at about 10-15mg/day for most of the previous 7 years - my bone density has barely changed in that time, it was still fine. All I took was calcium and vit D supplements, no bisphosphonates. Loss of bone density is not inevitable because you are on pred and many patients already have low bone density before being put on pred.

Pred gave me my life back - and believe me, I had tried many dietary approaches. I haven't tried the AIP diet as that is too extreme to maintain for me. I do eat low carb - and that does help a lot with pred side effects.

[Husband1938 in reply to PMRpro]

Hi what is AIP please?

[piglette in reply to Husband1938]

Autoimmune protocol (AIP) diet. It is a relatively new, food-based approach to eliminating unwanted inflammation in a person's body. It's a diet that's thought to help heal your gut to reduce inflammation created by autoimmune conditions. The diet is very restrictive and mainly includes meats and vegetables. It is like the paleo diet but much stricter. I am not sure it is for me!

[BeansHB in reply to piglette]

I've been on a modified AIP diet for the past 3 months. I eat eggs, and have an occasional glass of wine. I've learned to make grain-free substitutes for bread (including bagels), flax meal "tortillas", and bought kelp noodles to use instead of rice pasta, which I was using since I have been gluten-free for years due to Lupus. It was certainly an adjustment, but honestly, it's easier for me than eliminating salt, which I've had to do due to prednisone puffiness. There are some really good resources for meal preparation including No Grain No Pain by Dr. Peter Osborne, and The Autoimmune Solution Cookbook by Dr. Amy Myers.

[BeansHB in reply to MhairiP]

Thanks for your response MhairiP. I'm so sorry to hear about the osteoporosis. It's one of my worries about taking prednisone. Good luck with your research!

[SheffieldJane]

I am glad that you had such a positive experience with alternative treatments for Lupus, and wish you well in your quest for an alternative treatment for PMR. Personally, I wouldn’t take any risks with GCA as the consequences of failure are just too severe.

[BeansHB in reply to SheffieldJane]

I agree SheffieldJane! That's, in part, why I'm asking about others' experience. With Lupus, the kidney disease (which is what will kill you) comes on slowly, unlike sudden blindness or stroke associated with GCA. I don't want to mess with it, but I also don't want to just treat symptoms. I am hopeful that, over time, and with a good practitioner, I can find a way to help my body regain 'normal', non-autoimmune, functioning.