One Year into PMR/GCA - First Post

[Altpmr]

Hello All,

I am a 60 year old male diagnosed with PMR/GCA in March 2019. Prior to diagnosis, from November 2018 - January 2019, I was prescribed a couple of short term courses of tapering high dose corticosteroids due to severe inflammation and pain. Positive steroid response, with pain and inflammation returning after finishing steroids.

Bilateral pain was pretty much everywhere except spine.

Also temporal headaches and pain in left eye, left ear, and left side of throat ( without indication of throat infection ). Partial loss of vision in left eye.

Began 10 mg prednisolone and 4.5mg c-naltrexone in March 2019 with positive results.

Also went on a digestion resistant starch diet. Since I was already gluten free, that part was pretty easy.

Reduction of pain and gradual reduction of ESR/CRP form March 2019 - May 2019.

Started additional treatment of weekly IV treatment of 2g magnesium and 25g Vitamin C in May 2019.

Significant additional reduction of pain and sharp reduction of ESR/CRP from May 2019 - July 2019.

Stopped IV treatment September 2019 after 3 months of "normal" ESR/CRP, and was hoping to begin tapering prednisolone in October 2019.

Increased pain and return of temporal headaches and eye pain within 3 weeks of stopping IVs. Also experienced extreme exhaustion. ESR and CRP both increased.

Have resumed IV treatment with positive results. Hoping to taper prednisolone while maintaining IV treatment once ESR/CRP return to normal.

I found this forum while searching to determine if my symptoms and flare-up were unusual.

Throughout the last year I have experienced many of the things that I have read about on this forum including: (1) bilateral muscular pain in most areas except spine, (2) GCA symptoms related to head, eye, etc., (3) extreme exhaustion, (4) feeling of overall achiness similar to having flu without the nausea, and probably a few more that I forgot to mention.

Thanks to all for participating on this forum.

Good luck and good health !

[DorsetLady PMRGCAuk volunteer]

Hi

And welcome, sorry I’m going to ask questions.

Am I reading things correctly in that you’ve been on 10mg Pred all the time?

If you have GCA then 10mg is not enough - and your treatment is certainly different to the usual - why c-naltrexone? I see it’s used for some inflammatory illnesses like MS and Crohn's Disease but not usually for PMR and GCA

Where do you live?

[Altpmr in reply to DorsetLady]

Hi DorsetLady,

Thanks for your reply.

I live in the US. Sorry if some of my language is non-standard .

It's a long story about how I arrived at my slightly unusual treatment, but would be happy to provide the details in another post if anyone is interested.

From November 2018 - January 2019, before diagnosis, I was on high dose steroids with quick positive response for both PMR and GCA symptoms.

Once I stopped steroids, the symptoms increased in severity.

I am not a fan of doctors that prescribe pharmaceuticals like candy, and I do have problems with some meds, so I ended up finding an MD that specialized in complementary and alternative medicine.

He put me on a strict diet, with a couple of over-the-counter supplements along with 10mg prednisolone and 4.5mg c-naltrexone.

The low dose naltrexone ( LDN ) is supposed to help reduce inflammation. I haven't titrated the LDN so I don't know how much it has contributed to my recovery.

[DorsetLady PMRGCAuk volunteer in reply to Altpmr]

No worries about your language, it’s fine.

It just makes it easier to know where people come from - practices and medications vary from country to country, so our advice has to accommodate those differences.

It’s always interesting to hear of alternative treatments so please keep us informed of how things go for you.

The only thing we would all say is, if your symptoms do get any worse then please make sure you seek advice.

Just as a matter of interest, when you say high doses pre diagnosis, what doses in particular - and why were you on them before a diagnosis made?

[Altpmr in reply to DorsetLady]

Hi DorsetLady,

Thank you for all the info on this forum.

I will be sure to ask for advice if I backslide for any reason.

I was first on 80mg prednisone starting in early November 2018 because of general inflammation, temporal headaches, pain in eye. Saw a physician's assistant not a doctor. Tapered over about a months time. By the way, I had side effects to the prednisone including chest pains.

Symptoms came back with a vengeance in December 2018. Ended up in the Emergency Room on Dec 26, 2018. Word of caution, don't get sick needing ER treatment during holidays or during the times of year that residents change, which is what occurred. Again saw a physician's assistant. I went home with a prescription for 80 mg prednisolone. Same positive results without the side effects. Tapered over a months time and guess what ... symptoms returned.

Searched for specialists, found the one I have. Happy with results to date.

Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Altpmr]

Thanks, having started on 80mg (although already having lost sight in one eye, and this dose to preserve the other) I am very interested hear how you progress.

Now have been in remission for 3 years.

Good luck.

[Altpmr in reply to DorsetLady]

Thank you.

Happy that you are in remission.

Good health to you.

[Blearyeyed]

Hi Altpmr glad you stopped in , just like Dorset Lady I have a few questions before we can give you a point of view.

Do you have any other illnesses that mean you are being giving the IV supplements and Naltrexone ?

Are you on any other medications apart from those for GCA?

And as DL says, Have you only ever taken 10 mg of Pred with a GCA diagnosis?

Hope we hear from you soon and can give you some support

[Altpmr in reply to Blearyeyed]

Hi Blearyeyed,

Please see my reply to DorsetLady regarding my original steroid dosage.

I do not have any other illnesses that require the IV treatment.

I am not on other meds.

The MD that is treating me specializes in complementary and alternative medicine and therefore is a bit unconventional.

The magnesium is supposed to help "relax" the muscles and help reduce pain. I have to say that I believe that is true.

The Vitamin C is to reduce inflammation and give my system a boost. When I was out of town recently I was not able to get the full 25g ( just 10g ) of Vitamin C and did notice a difference.

I tried to supplement by ingesting additional Vitamin C, but was not able to replicate the effects of the IV.

The doctor believes that if you treat your body properly, it will heal itself, thus the diet and low dose meds.

[Blearyeyed in reply to Altpmr]

We do suggest people try vitamin C and Magnesium supplements regularly on the forum especially to assist other types of nerve pain and to boost the body processing.

I am very interested in seeing experiences of people whom use these via IV instead of oral supplements , as having EDS , this sort of nutrient based therapy is something being trialled.

Out of interest were you taking an oral vitamin and mineral or just these one of these nutrients orally before trying the IV approach ?

It would be good to know if you felt a marked difference between the two if you had that experience.

It could well be thought , that although the IV is helping your system process the drug and keep your body function at a healthier level , and reduce muscle pain and side effects, the reason the problem keeps coming back is because you haven't been on Prednisone at a higher enough dose for long enough and this may need discussing with your Doctor . Using all the tools of complementary medicine is really positive but perhaps you do need to stick with the Conventional Medicine longer too if you want the illness to have a chance if full remission.

That's just based on the general experience written on the forum as well as I my own.

Lovely to hear from you though , please keep us updated.

[Altpmr in reply to Blearyeyed]

Hi Blearyeyed,

Part of my diet/supplements was oral Vitamin C and magnesium.

I also did apply ( with massage ) "magnesium oil" to painful areas when the pain was bad and also when I had the flare-up. I currently soak in a hot bath with Epsom salts ( magnesium ) and Arnica daily.

I don't think that you can get the effective amount of Vitamin C that I am receiving via IV by ingesting orally.

The primary method that the body uses to accept magnesium into the bloodstream is by re-uptake through the kidneys with excess excreted.

The IVs definitely work better than oral ingestion.

You brought up a good point about higher dose of prednisolone, which I have have discussed with both my primary care and specialist doctors. The consensus was that we don't know the answer to that.

We decided to continue with the 10mg pred + IV because it appears to be working. Pain is continually decreasing and ESR/CRP dropping. For several months I had perfect labs and almost zero pain which is why we stopped the IVs and was hoping to begin tapering.

Thank you for all your input and I will be sure to keep everyone informed about my progress.

I do have a bunch of questions which I will share on other posts.

Thank you again.

[SheffieldJane]

Hello and welcome. I was particularly interested in your Magnesium 2g and Vit C 25 g .I haven’t heard of this treatment before but can see the logic in it. Who prompted that?

Your treatment regime seems unusual for GCA with two bursts of high dose and then 10 mgs. Was your visual impairment caused during this treatment? Most be people start on about 60 mgs of Pred and taper down gradually in small doses. Are you in the States?

Sorry for all the questions but this is an unusual approach.

[Blearyeyed in reply to SheffieldJane]

Just while we wait to hear back , I thought I'd let you know what I've heard if you are interested.

IV vitamin and mineral and saline infusions are being used and trialled in the US as what is called a MiTo Cocktail ( mitochondrial ) in other illnesses , especially Mitochondrial Disease and Ehlers Danlos , Connective Tissue Diseases , Immunity Disorders like CVID and an allergen disorder called MCAD/ MCAS.

The way it seems to work is by bypassing the gut , any malabsorption that is occuring because of the symptoms these illnesses can cause means the IV infusion still allows the nutrients to pass into the blood stream , repairing at a cellular level , improving energy and reducing the Autoimmune / Hypersensitivity responses.

It is very early days as a full treatment option for anyone or any disease , I think we would be waiting decades for it to become an NHS standard , but more doctors and specialists are beginning to use IV nutrients as an add on option with other diseases to see if it reduces side effects in the US

Many US patients with the right health care provision are opting for trying it themselves or self funding it after their research into alternatives as well.

Most IV nutrient infusions are multi nutrient rather than one or two , although even in the UK IV B vitamin / folate complex is used , but like you I was interested why it was offered as just Vitamin C and Magnesium in this case and what the results were.

Most Doctors are still sitting on the fence when it comes to using IV nutrient infusion therapy in general.

[SheffieldJane in reply to Blearyeyed]

I would stick my arm out for it. It makes sense.

[Altpmr in reply to Blearyeyed]

Hi Blearyeyed,

My specialist is a minimalist with respect to meds, and he felt that only mg and C were needed.

I can't ague with the success that I have had with the treatment.

It works for me and I would recommend others to try it if they have the opportunity.

Keep in mind that it wasn't an overnight success. The doctor originally said we should try it for 4 - 6 weeks and see if it helped. After 4 weeks I wasn't sure. After 6 weeks I thought it was helping. Now I an a believer.

[Altpmr in reply to SheffieldJane]

Hi SheffieldJane,

My specialist MD ( complementary and alternative medicine ) recommended the IV treatment.

The pred and naltrexone were gradually doing their job, but he thought that the IVs might speed my recovery.

The IVs did indeed kick my recovery up a good bit and I intend to continue the treatments until after I taper pred .

Whenever I stop the IVs, or do not get the full dose ( as when I was out of town ), my symptoms increase as do my lab numbers.

Apparently the IVs are helping.

The visual impairment was a result of inflammation of the optic nerve prior to diagnosis.

Yes, I am in the US .

[SheffieldJane in reply to Altpmr]

How interesting. I hadn’t heard of this before and really like the idea. Thank you for answering everybody’s questions so comprehensively and patiently. I am glad that you are feeling well.

[Altpmr in reply to SheffieldJane]

Thank you.

[Yellowbluebell]

Hi what was the reasoning behind magnesium and vitc? Neither of which is a recognised treatment for gca? Was this reccomended by gp or rheumy? Sorry to ask more questions.YBB

[Altpmr in reply to Yellowbluebell]

Hi Yellowbluebell,

By now you may have seen my previous responses but for continuity of the thread ...

The magnesium is supposed to help "relax" the muscles and help reduce pain. I have to say that I believe that is true.

The Vitamin C is to reduce inflammation and give my system a boost. When I was out of town recently I was not able to get the full 25g ( just 10g ) of Vitamin C and did notice a difference.

I tried to supplement by ingesting additional Vitamin C, but was not able to replicate the effects of the IV.

[PMRpro Ambassador]

Whilst I would cheerfully try it for relatively straightforward PMR I fear nothing would induce me to mess about with GCA, especially if I had already suffered some loss of vision due to the inflammation as you had. There are too many stories on this forum alone about the end effects of inadequately treated GCA. I can only assume your 2 lots of 80mg pred had been enough.

But there are no adverse effects of pred that outweigh the ultimate adverse effect of GCA - total and irreversible blindness

[Altpmr in reply to PMRpro]

Hi PMRpro,

I am seeing 3 eye doctors to monitor the GCA, an optometrist, a retina specialist, and a neurological ophthalmologist.

The GCA is under control. Inflammation in gone in my eye.

Thank you for all the work that you do for the forum members.