Suitable alternative to IVIG in the UK to treat MCAS/POTS?

[Fogbuster]

Getting IVIG in the UK is almost impossible, does anyone know of anything which could be a reasonable alternative to try that could have similar effects at modulating the immune system? This includes over the counter, online pharmacies needing no prescription and/or prescription meds via NHS. Many thanks

 

[Pearshaped]

it could be helpful to share what you have tried so far for treating MCAS and POTS.

 

[Fogbuster]

Hey @Pearshaped,

Fluoxetine, venlafaxine, propanolol, coq10, h1 & h2, cromolyn nasal spray, cbd oil, magnesium glycinate, electrolytes. Still horrendous brain fog, non stop varying fight/flight and forehead pressure on a daily basis. Electrolytes + lots of water have helped ease the headache pain in my upper neck & back of head as the day progresses. Only significant improvement I get in symptoms is between 10-2am, it's like clockwork every single night, I'll suddenly feel lighter and it's as if my general bodily dysfunction is reversing. It's the closest to normal I feel, then comes morning and it's back to waking up with sinus headaches, severe brain fog and medium to high sympathetic tone...

 

[Pearshaped]

Bump

 

[minimus]

I don't know of any drug or supplement that is equivalent to IVIG. My impression is that scientists aren't entirely sure how IVIG actually works biologically, at least when it comes to autoimmunity.

If it's any consolation, two doctors who have treated POTS patients with IVIG, Jill Schofield and Kemal Chemali, think that IVIG actually worsens mast cell activation, at least in the early stages of IVIG treatment (see attached PDF). They think mast cell activation might drive many of the severe side effects many POTS patients experience when they first are put on IVIG. I know that some CFS and POTS patients cannot tolerate IVIG, and almost seem to be allergic to it.

You may have already read it, but this paper by Molderings and Afrin discusses the medications they think are worth considering to treat MCAS. IVIG is not on their list, although this could be because no insurer would ever authorize a trial of IVIG to treat MCAS, since MCAS remains a fairly controversial diagnosis within the medical community.

Finally, there are some oral medications that are used to treat POTS. David Systrom, for example, uses three oral medications to treat his dysautonomia, ME/CFS, and/or POTS patients: mestinon, florinef, and/or midodrine. I don't think any of these medications are thought to worsen mast cell activation.

 

[Fogbuster]

I don't know of any drug or supplement that is equivalent to IVIG. My impression is that scientists aren't entirely sure how IVIG actually works biologically, at least when it comes to autoimmunity.

If it's any consolation, two doctors who have treated POTS patients with IVIG, Jill Schofield and Kemal Chemali, think that IVIG actually worsens mast cell activation, at least in the early stages of IVIG treatment (see attached PDF). They think mast cell activation might drive many of the severe side effects many POTS patients experience when they first are put on IVIG. I know that some CFS and POTS patients cannot tolerate IVIG, and almost seem to be allergic to it.

You may have already read it, but this paper by Molderings and Afrin discusses the medications they think are worth considering to treat MCAS. IVIG is not on their list, although this could be because no insurer would ever authorize a trial of IVIG to treat MCAS, since MCAS remains a fairly controversial diagnosis within the medical community.

Finally, there are some oral medications that are used to treat POTS. David Systrom, for example, uses three oral medications to treat his dysautonomia, ME/CFS, and/or POTS patients: mestinon, florinef, and/or midodrine. I don't think any of these medications are thought to worsen mast cell activation.

Thankyou for your helpful response, it's much appreciated. I'm seeing my cardiologist (who also specializes in autonomic dysfunction) on the 30th, so hopefully I'll be able to provide a positive update.

 

[ryan31337]

My recommendation is to push your cardiologist for Ivabradine - this helps me enormously with my POTS symptoms. With the right doctor you can get it on the NHS. Its no cure of course, but it seems to paper over the cracks quite well (far better than beta blockers in my experience).

It can be used with Mestinon too, which also shows some promise. Again available on NHS from the right docs. You will probably find it easier to get prescribed if you show some neuropathic element to your POTS.

 

[Fogbuster]

My recommendation is to push your cardiologist for Ivabradine - this helps me enormously with my POTS symptoms. With the right doctor you can get it on the NHS. Its no cure of course, but it seems to paper over the cracks quite well (far better than beta blockers in my experience).

It can be used with Mestinon too, which also shows some promise. Again available on NHS from the right docs. You will probably find it easier to get prescribed if you show some neuropathic element to your POTS.

Interestingly enough I was accidentally prescribed it by my GP, I wasn't meant to be given it until certain tests came back showing that it was required, but those tests came back seemingly fine so I was given propanolol instead. The propanolol hasn't proven to be very effective at all, so tempted by the idea of giving the ivabradine a little trial. I experience orthostatic hypertension though, so maybe it's not a good idea?

After about an hour or two of being upright I will begin to get a pretty major increase in sympathetic tone which makes me spacey (even more foggy than my baseline), on edge, i appear anxious looking, fidgety, tense and uncomfortable. The only thing which can reduce this significantly is lying down for 10-20 minutes, if I'm unable to lie down the next best thing to do is to eat some salty protein and relaxing carbs. Anyway, around 45 mins later after getting up from lying down I'll start to feel my sympathetic tone gradually increasing again... I've had my catecholamines tested and apparently everything was fine too, so a bit confused to say the least. From your own experience, do you have any ideas what this could be caused by?

 

[ryan31337]

I experience orthostatic hypertension though, so maybe it's not a good idea?

I had the same hypertensive response, 24hr monitor peaking as high as 220/140. The cardiologist's first call was still Ivabradine and my blood pressure control did improve on it despite Ivabradine not having any targeted effect on BP (overall lowered sympathetic tone helped I imagine).

After about an hour or two of being upright I will begin to get a pretty major increase in sympathetic tone which makes me spacey (even more foggy than my baseline), on edge, i appear anxious looking, fidgety, tense and uncomfortable. The only thing which can reduce this significantly is lying down for 10-20 minutes, if I'm unable to lie down the next best thing to do is to eat some salty protein and relaxing carbs. Anyway, around 45 mins later after getting up from lying down I'll start to feel my sympathetic tone gradually increasing again... I've had my catecholamines tested and apparently everything was fine too, so a bit confused to say the least. From your own experience, do you have any ideas what this could be caused by?

Yes, this was very much my experience too, and still is if I'm not careful controlling my upright activity and knowing the warning signs.

The Ivabradine certainly takes the edge off, but also for me it was as much about what I was eating. An OI-aware Endocrinologist diagnosed Reactive Hypoglycemia and said it was common with his POTS patients. Its a bit of a woolly diagnosis but in essence seems to revolve around our dysautonomia applied to digestion.

I had no idea but I was on a blood sugar rollercoaster. I'd eat carbs, have an hour or 2 of feeling OK and then have massive crashes with inappropriate hunger, chills, sweats etc. I'd have literally no option but to lay down/nap, but then wake up 20mins later refreshed, as if nothing had happened. This would repeat 3-4 times throughout the day, often waking me up at night too. I think it likely had an impact on my crazy BP readings too.

Its not diabetes, but poor glucose tolerance is quite well established with Small Fibre Neuropathy driven POTS. Worth being aware of because it comes on insidiously, so its hard to spot.

 

[pattismith]

One plea that can justify the switch from beta-blocker (propanolol) to Ivabradine is intolerance to beta-blocker because of dry eyes.

It was the reason for me to do the switch, and now that I am on Ivabradine, it really seems a game changer for my tachycardia, and also my pain.

 

[kangaSue]

I experience orthostatic hypertension though

Have you had your blood renin level tested, or had your renal arteries or veins checked for any narrowing which can cause excess renin release?

 

[ryan31337]

Have you had your blood renin level tested, or had your renal arteries or veins checked for any narrowing which can cause excess renin release?

This is a good catch and was done by my first cardiologist who considered POTS contentious, so he was looking for classic causes of hypertension.

I had a CT with contrast to check for renal stenosis etc. That was clear so the only course of action as far as he was concerned was to load me up on several anti-hypertensives....thankfully I knew better, ignored him and sought out another doctor that understood POTS. The new cardiologist wrote some interesting comments in the letter to my GP about the other doctors' seemingly willful ignorance when disputing POTS guidelines from several major cardiology societies...

Renin was checked later with Aldosterone, which seems to fall more under the scope of endocrinology. Renin was normal, Aldosterone was very low, apparently not that unusual in an OI patient according to my endo.

 

[Fogbuster]

Have you had your blood renin level tested, or had your renal arteries or veins checked for any narrowing which can cause excess renin release?

I have not, will have to ask my cardiologist on the 30th.

 

[kangaSue]

I had a CT with contrast to check for renal stenosis etc.

They will often only be checking for renal artery stenosis and any (left) renal vein narrowing tends to get overlooked due to the wide variation in "normal" renal vein diameter.

Renin was checked later with Aldosterone, which seems to fall more under the scope of endocrinology. Renin was normal, Aldosterone was very low, apparently not that unusual in an OI patient according to my endo.

A problem that can arise here with either renal artery or vein stenosis is that blood levels of renin can be normal because the kidneys are dumping the excess, or renin production gets shut down in one kidney to maintain homeostasis if the other one is over producing renin, so urine renin level or direct testing of renin from within the vessel itself (during an Angiogram/Venogram) can need to be tested too to rule these out (if you had other symptoms that could fit for Nutcracker Syndrome or maybe Fibromuscular Dysplasia affecting kidney artery/ies).

I have Nutcracker Syndrome (NCS) and Autonomic Neuropathy. Renin level is slightly elevated, morning cortisol and aldosterone are "normal range" but near the bottom of the scale. NCS can cause excess venous pressure into the left adrenal gland, to possibly cause adrenal insufficiency, and/or mess with the whole renin aldosterone angiotensin system whic,h in turn, can affect your bp and cardiac regulation. More common to have low blood pressure with this (that's the case for me) but I know of a number of cases with unexplained hypertension. About 20% of people with NCS have POTS too, and the symptom of chronic fatigue pops up often.

 

[ryan31337]

Interesting, thanks for sharing the details @kangaSue.