10 replies to this topic

[Leni]

Hello, 

 

Not sure if this is the right place to post this but I would be so grateful for some input. 

 

I'm a female in my late twenties, up until weeks ago I didn't have any noticeable health problems with the exception of quite bad endometriosis around my menses, starting with my first menses (age 17).

The past weeks all of a sudden I felt some pain in my right hand, then developed swelling in a PIP-joint of my right thumb. I had a muscle twitch under the left eye at the same time for days in a row (currently gone). After a few days I noticed similar swelling in a DIP-joint of the index finger of the other hand. I then noticed swelling in the MTP-joints of both of my big toes too, as well as swelling in my knees. I always have very good bowel movements, but my bowels became obstructed the past two days, then overnight I developed very very loose stools. (Sorry for the details). My eyes have been tearing for an hour two times, with tears running over my cheeks and I can't control it. I feel some (minor) pain in the wrists, and my right hand and shoulders, every now and then. Also in my right leg for a moment. I've felt particularly exhausted/lethargic the past weeks (but I've felt tired for years even though I sleep well). Very occasionally I feel a very brief shooting pain in my lower right abdomen.

 

My GP took some tests: thyroid function test came back fine, rheumatoid factor test came back negative (as far as I understood the RF test is not entirely accurate though). B12 was too high (I eat a vegan diet and supplement daily with 1000mcg methylcobalamine: I will decrease the amounts). 

 

I've been wondering if I may suffer from reactive arthritis. I did have a tremendously painful menses a few weeks ago (but I usually have that) but this time I literally felt excruciating pain whenever I ate something. 1-1,5 weeks later the pain in my right hand started.

 

My GP is quite lax in running tests, let alone referring me to a specialist. She has assured me joint damage is 'nicht im Frage' since she says I'm still stretching my hand and joint swelling is clearly visible but swelling and pain are not as hefty as in patients that suffer joint damage. I'm not at all reassured by her statements however.

Overall I'm trying to educate myself a bit so that hopefully I can convince my GP to order some tests that come most recommended given my health concerns, but also: as I want to ensure this won't worsen and that I don't suffer joint damage.

 

As such I would be so so happy with some input.

 

As to my diet: I've been a vegan for nearly 9 years. I tend to eat a quite balanced healthy diet, conservatively supplementing those vitamins/minerals that I according to Chron-O-Meter run a bit low in (although, granted, I should have supplemented with taurine/beta-alanine/creatine and did not).

I supplement:

- D3, B12, Selenium, Magnesium/Potassium, Zinc in limited amounts.

- Some supps for bone health: Strontium ranelate (low dose), silica, boron, K2 MK-4.

- Curcumine (BCM-95, 400mg per day).

- Some Glycine and Melatonin to enhance my sleep

- 5mg Lithium Aspartate every day. 

 

The only change in my supplements the past months, has been the addition of (Niagen) Nicotinamide Riboside 250-375 mg per day. 

Plus I used quite a bit of BPC 157 over the past months to manage pain from endometriosis.

3 weeks ago I started to use a natural progesterone cream, as I wondered if it may help with my endometriosis (of course I would have been better off testing my hormone levels but my GP is particularly unhelpful with that regard).

 

With this in mind:

• I have been wondering if perhaps the Nicotinamide Riboside could somehow have brought up gout? (Although I have very limited pain so I'm not sure if this could be gout). Should I drop the NR?
• Or if the BPC 157 that I used in rather high amounts may have increased uric acid levels, resulting in Reumatoid arthritis after all?

Overall this is perhaps some very uninformed guesswork, but diagnoses appears difficult. Ideally I would get a referral to a rheumatologist but my GP doesn't want to do that at this stage.

 

Is there anything I can do right now/any supplement I can take to limit the chances to suffer from joint damage?

• I saw some research suggesting Boswellia as well as Ashwaganda may decrease inflammation from arthritis, and have ordered LEF's 5-LOX inhibitor to take 100mg per day, as well Frankincense resin to add to tea. Are there any potential side-effects to watch for?
• I ordered KSM-66 Ashwagandha planning to take 600mg per day. Could this increase my testosteron levels and is that something to watch out for?
• I just added MK-7 to my supps, as I only took MK-4.

Are there any specific tests you would advice me to convince my GP to order?

 

I would be very very grateful for any advice/input. Thank you very much in advance!

 

 

 

Edited by Leni, 22 November 2017 - 08:15 AM.

[Leni]

I thought about asking my GP to order the following tests (although I would be surprised if she would want to, as she tends to follow a 'we'll wait and see'-approach):

1. Anti-CCP antibody test
2. C-reactive protein (CRP).
3. Anti-nuclear antibody (ANA)
4. The 14-3-3η (eta) protein test (I would be highly surprised if she would want to order this one).
5. Complete Blood Count (CBC)
6. Globulin test
7. Uric acid test

Perhaps I should ask for a specific stool test too to look at intestinal inflammation?

I already had an ESR test that came back within normal ranges, and as mentioned I had a RF-test that came back negative (but I'm not sure about the accuracy of the RF-test in general).

 

Does this sound reasonable or are there any other tests I should ask for?

Edited by Leni, 22 November 2017 - 08:51 AM.

[Turnbuckle]

The only change in my supplements the past months, has been the addition of (Niagen) Nicotinamide Riboside 250-375 mg per day. 

Plus I used quite a bit of BPC 157 over the past months to manage pain from endometriosis.

3 weeks ago I started to use a natural progesterone cream, as I wondered if it may help with my endometriosis (of course I would have been better off testing my hormone levels but my GP is particularly unhelpful with that regard).

 

 

So one new product (NR), one novel peptide with unknown side-effects, and a hormone that can be problematical for some people.

 

Wouldn't the logical approach be to stop the last one you added and see if symptoms abate?

 

[Leni]

 

 

 

So one new product (NR), one novel peptide with unknown side-effects, and a hormone that can be problematical for some people.

 

Wouldn't the logical approach be to stop the last one you added and see if symptoms abate?

 

 

 

Thank you very much, Turnbuckle. I should have mentioned I stopped using the natural Progesterone cream one week ago out of concern (after having used it for two weeks in total). I stopped using the NR almost 2 weeks ago when the first symptoms came up (after having taken it for perhaps 2-3 weeks in total), and started taking it again days ago. Which I should probably not have done and I will stop taking it again.

 

But perhaps I should wait (much) longer for the symptoms to potentially abate, before I draw any conclusions/undertake anything else. Admittedly I'm very worried so I may react a bit out of panic  wanting to ensure I don't end up with permanent joint damage. (Not in the least as the symptoms rapidly seem to spread with now also mild pain in my (swollen) right knee),

Edited by Leni, 22 November 2017 - 06:44 PM.

[Turnbuckle]

I wonder why you are taking NR if you are in your twenties. NAD+ drops off with advancing age, but the level in your twenties is likely not much different than it was in your teens. Supplements to raise NAD+ have quickly become the new snake oils, but it's not clear what the chronic effects of having it too high might be. If it's high enough, that would keep your mitochondria in a state of fission, which may lead to a state of inflammation--

 

Unbalanced mitochondrial dynamics exacerbates inflammation and is of interest for its possible role in the pathogenesis of inflammatory bowel disease 

http://theses.ucalga.../3260?mode=full

 

 

If this is indeed the cause and not just a coincidence, you might try NSAIDs and collagen powder to reduce the inflammation, as well as dropping the NR.

[Leni]

Thank you very much for that study, Turnbuckle. I am in my late twenties, but I will definitely follow a more conservative approach again when it comes to using supplements - as I used to. I will drop the NR again, just in case. I still have some collagen and gelatin powder over here (that I normally use in a shampoo) that I will take for now. Could I try the LEF Boswellia Extract (5-lox inhibitor) and Ashwagandha (KSM-66) to ease down the inflammation instead of NSAIDs, or would you not recommend that?

 

My only concern is if this inflammation is not related at all to any of the supplements I'm taking, could it potentially become more difficult to get a proper diagnosis if I start to use NSAIDs (or anything else) to reduce inflammation?

 

[Turnbuckle]

The thing about inflammation is that it can feed on itself, so best get a handle on it. Another supplement linked to joint pain in some people (like me) is resveratrol. It's possible that pterostilbene may act the same way, as it is very similar chemically.

Edited by Turnbuckle, 22 November 2017 - 08:16 PM.

[Matt]

It could be reactive arthritis, I'm not sure. In 2007 I developed joint pains and popping all over my body, and it seem to have started after I had a bad stomach bug. I think it was food poison, but again, not sure. It lasted a few months and would come and go in cycles. It would be painful to even stand at times.. but gradually it went away. Each cycle was less severe than the previous. 

 

Pycnogenol might help https://www.ncbi.nlm...pubmed/18570266

Also Green Tea Extract is known to protect joints from inflammation and breakdown of cartilage. https://www.ncbi.nlm...les/PMC2888220/

 

You should push harder for these blood tests, so you have a better idea of what's going on. Some of these blood tests aren't even that expensive. Get CBC, CRP, ANA done.

Do you have a fever or night sweats?  Have you ever had appendicitis? 

I'll try to think some more....

Hope you figure it out! 

 

[aribadabar]

OK, here are my 2c: IMHO, these joint problems and the ongoing feminine issues point to a "natural" hormonal disbalance.

Progesterone cream probably tipped that disbalance even further into the wrong direction if you are saying that you started feeling worse after commencing using it - so discontinue using it, if you are still on it.

 

NR does seem to cause joint issues with some people, males included, so keep it away until you see normalization.

 

I would focus on balancing estradiol and see if that will fix the joint issues as a side but welcome effect.

I suggest drinking Angelica root tea (it's rather nasty tasting, but very effective), especially around your period, to help with the hormonal issues.

Boswellia extract should alleviate the the joint inflammation in the meantime, curcumin too.

 

Hope this helps you.

 

[Leni]

Thanks a lot, Turnbuckle, Matt and Aribadabar. Sorry for my late reply but frankly things have not been going great.

 

As it stands now it is very likely I have inflammatory autoimmune arthritis - breaking down my cartilage. I didn't get more bloodwork done as the rheumatologist apparently can only order specific tests such as the ANA-test, but I have so many symptoms currently that my GP suggested too I may have inflammatory autoimmune arthritis (and going over publications I'm rather convinced of this too).  I will see a rheumatologist early January. If I can't somehow stop this 'cascade of inflammation' taking place, as things are standing now I will likely have to start taking medication sooner rather than later. As a lot of my joints are involved by now (wrist, finger-, toe-, knee-, ankle joints, even temporal joints, and I experience pain in my neck/shoulders too, as well as my left eye and my right heel), inflammation seems to spread rapidly - Turnbuckle your words were spot on!

 

Either way, as to supplements: I doubt they could have caused any of this, but I've stopped taking the NR and progesterone cream for perhaps a month now (with no change in swelling).

 

I'm taking supps specifically to try to ease down the inflammation but I don't really seem to notice any results. Sorry to ask but I would very much be helped some new input at this point. 

Currently I'm taking:

 

For joint health:

• Glucosamine sulfate 2x 750 mg per day
• Silica
• 5g gelatin per day
• 5g collagen per day

For bone health:

• 90mcg MK7  per day
• 15mg MK4 per day
• 3mg boron per day
• 500mg calcium every two days
• 140mg Magnesium citrate every day
• 340mg Strontium Citrate every day
• Zinc Picolinate 15 mg per da0y
• 4000IU D3 (in oil) per day 

Against inflammation:

• 2x 500mg Curcumin (Meriva) per day and 80mg Curcumin (Longvida) per day + turmeric and ginger in my meals
• 2x 100mg Boswellia Serrata (with 20mg AKBA) per day
• 2x 300mg Ashwagandha (KSM-66) per day
• I've just ordered a good quality fish oil supplement

I may stop taking the Boswellia Serrata and Ashwagandha supp once I finished the bottles as I don't seem to notice effects and I dislike taking 100's of supps not having insight in possible effects/synergies - but then again: perhaps swelling/pain would be worse if I don't take them. I will see at that moment in time. 

 

Pre- and probiotic support:

• FOS
• L-Plantarum 299V 10 billion strains
• Lactobacillus GG 10 billion strains (Cullturelle)
• I'm considering adding VSL#3
• I will add some fermented foods again.

I should add I was prescribed an antiobitic two weeks prior to the start of these symptoms, and I've wondered if it could have played a role in this. But it is also certainly not unlikely I may have suffered from inflammatory arthritis (much) longer, and the symptoms only became apparent more recently. 

 

Additionally..

• Selenium (L-selenomethionine) 100mcg per day
• Melatonin 3mg per day, Glycine 5g per day (to enhance sleep)
• B12 1000mcg every 2 days

I would very much appreciate any advice with this regard. Any supps you would advice me to take with this newest diagnosis, or that you would advise me not to take? As it seems highly unlikely the supps contributed to any of this, I'm considering starting the NR again, or would you advise against that? I've just ordered a good fish oil supplement - I'm quite addicted to walnuts and my omega 6 intake must be very high: this may contribute to the inflammation? I'm going to try to cut down on my walnut-intake.

 

Aribadabar thank you very much; I will look into Angelica root tea. However, I will want to finally press my GP to see a gynaecologist too. I think these inflammatory arthritis complaints may be related to the endometrosis - it's a wild guess but I saw both seem to coincide with raised Interleukin-17 levels. (Add to this I've had IBS for years). I also saw research indicating that removal of the instances of endometriosis in surgery may lower IL-17 levels. 

 

Thanks Matt, my rheumatologist will likely order several blood tests (as well as MRI's). I will get the CRP-test done this upcoming Monday already. Thanks for the Pycnogenol-study. I will look into that. Admittedly Pycnogenol seemed expensive though (50 euro's for a month supply?). I don't mind spending that if it is effective, but at this point I try to chose my best options as I've bought lots of supps the past period with no noticeable effects on inflammation. I do drink quite a bit of quality green tea every day.

 

Many thanks again to everyone!

 

 

 

 

 

Edited by Leni, 10 December 2017 - 03:40 AM.

[ambivalent]

How have things progressed, Leni?

 

This post might be of interest - fisetin could well be a worthwhile addition to your anti-inflammatory protocol. 

 

https://www.longecit...-36#entry917698