Wobenzyme

[ProcrastiBaker]

Good morning from Colorado, USA. I find this forum to be so valuable and supportive, so thanks for being there! My nephew suggested that I try Wobenzyme for inflammation. He said that you have to take a lot of it for ten days (he didn’t specify how much). Has anyone tried it? I am a skeptical person, so I would not stop the prednisone. He wants me to stop, but I sm sure he has no idea what the consequences would be for me. He seems to think that my condition is rheumatism in the old fashioned sense. I would live your feedback.

[DorsetLady PMRGCAuk volunteer]

Well I'm sure if it were that good, we would all have heard about it....and please inform him that PMR is not rheumatism......🙄.

and maybe steer him towards this - so he knows what PMR is -

healthunlocked.com/pmrgcauk...

[123-go]

I completely agree with DorsetLady.

[PMRpro Ambassador]

How long have you been on pred? Having looked at your profile - long enough for your adrenal function to be suppressed - so don't think about stopping pred suddenly, you could become very ill.

I just looked it up on Wiki:

"In clinical studies, oral administration of proteolytic enzymes to healthy volunteers resulted in immunomodulatory effects and systemic therapy before and after exhaustive exercise increased maximal concentric strength, and had favorable effects on inflammatory, metabolic and immune biomarkers. In a randomized trial of subjects with moderate-to-severe knee osteoarthritis, oral proteolytic enzymes were found to have comparable effectiveness as diclofenac in relieving pain and increasing function"

The OA study is here: ncbi.nlm.nih.gov/pmc/articl...

We are neither healthy nor do we have osteoarthritis.

It was developed by an Austrian physician in the 1950s. My rheumatologist and my rheumy-trained GP both trained in Austria. If the stuff was of any real use at all at least one of them would have suggested it (the GP is very keen on such things).

It isn't vegetarian by the way and isn't the cheapest supplement on the block. I also can't see how it would work for us without taking it every day as long as the underlying autoimmune disorder is active - like pred it won't act on the actual disorder, it would at best be a management strategy,

[ProcrastiBaker in reply to PMRpro]

I have been on pred for six months. I am now at 9mg/day. If you all have not heard of this enzyme supplement, then I am confident that it isn’t relevant for us. My nephew also suggested a red light therapy: novothor.com. It is supposed to help with inflammation. Have you heard of that?

[DorsetLady PMRGCAuk volunteer in reply to ProcrastiBaker]

Short answer -no -not on this side of the pond…and whilst it may help with the “add-ons” of PMR, I doubt very much is does anything for the underlying illness.

Save your money, and stick with the Pred.

[cranberryt in reply to ProcrastiBaker]

I just purchased a red light therapy wrap for another family member. The one I have has a warning notntonuse it with steroids though I don’t know why or if it means with steroid injections vs. pills. I was hoping to try it out when I have a bad back day. I am down to 1.5mg so I might still try it.

[ProcrastiBaker in reply to cranberryt]

Thank you!

[PMRpro Ambassador in reply to cranberryt]

Why not? Do they mean corticosteroids or anabolic steroids (the naughty ones)?

This

ledtechnologies.com/blog/li...

says it is fine touse red light therapies with drugs

"Because light therapy is a natural and non-invasive process, you can use it in conjunction with most other arthritis treatments, such as NSAIDs, corticosteroids, or painkillers. If you use a topical arthritis cream, apply the cream after your light therapy session to avoid interfering with the treatment. The CDC recommends other ways to reduce arthritis pain through lifestyle changes, including you can stay active, maintain a healthy weight, and protect your joints by avoiding the risk of injury wherever possible. Light therapy can also be incorporated into any workout or recovery routine."

[SnazzyD]

You’re not the first with PMR who has a friend/relative dishing out advice on treatment without having the foggiest idea about PMR. The word inflammation covers a range of biochemical processes too, so whatever the remedy is, it needs to cover all the main bases. Aspirin is antiflammatory for example, but only against a certain pathway not, for example against interleukin-6 which is likely needed. I think there are enough people who hate Pred in the medical and recipient world that if there was a supplement that worked with no side effects we’d know.

[Blearyeyed]

The suggestions from our nearest and dearest often come from a good place ....even though they can often make you want to scream !But our Friends and Family will often scour sources of information about improving health or inflammation for healthy people and then try and push us towards these because they are worried about us , and also don't really understand what type of steroids are used in our treatment , and how important that can be to our recovery. It can sometimes make us feel a bit lost or add stress and pressure that we don't need.

Often our loved ones feel powerless when we become ill and believe that every illness has a cure , or a quick fix , and that they will feel less out of control or helpless when they see our pain if they find a quick fix solution.

More often than not , what we really want from them us a bit of understanding about how what we can manage gas changed and some practical help with chores to lighten our load and reduce our flares in a far more positive way.

Unfortunately, what is good for the healthy gander is not always good , or it can actually be bad , for the chronically ill goose. What's great for those with no health problems can be terrible , torturous or like poison to some one with a chronic condition , either a long term on like PMR , or a lifetime condition like Arthritis, Heart Conditions and others.

Even treatments for very similar long term illnesses , or lifetime conditions are not like for like , either. What might work for someone with osteoarthritis won't necessarily work or be enough for someone with rheumatoid arthritis or PMR. What works for one person with PMR or GCA alone , may not be enough for someone with PMR and OA , PMR and Fibromyalgia, PMR and liver or heart conditions and so on.

So it's good to give recommendations and tips of a general nature used within most chronic conditions but always understand that you need to advise people that they need to be sure they can use the advice first based on their individual needs.

As the others have said , your Nephew might find it easier to understand what you have and why you need to take steroids if you give him a positive , simple explanation of what you have and send him to the right PMR fact pages to read.

Many lifestyle changes and types of moderate exercise and supplements are used by people with PMR/ GCA to help reduce their side effects and symptoms and to maintain their general health and strength , but they are those used by other people whom have recommended them after coping with the illness they have , and with PMR they are used alongside the type of steroids based therapy you are on , not instead of it.

Trying any type of new supplement or complementary treatment should only be done by people with any chronic health problem after checking if it's ok to do , and under supervision by your GP , Specialist or part of your Medical Health team , like a Nurse Practitioner or experienced Rheumatology Physiotherapist. All drugs or supplements should be checked against any medicines you use to make sure that combining them will not stop your drugs from working , or cause serious side effects.

The treatment he advised is not something someone should try without proper guidance when you are already taking antiinflammatory medication like steroids.

His heart is in the right place but he needs to do a lot more education on your illness first before making suggestions that could seriously effect your health.

[ProcrastiBaker in reply to Blearyeyed]

I deeply appreciate the time you took to thoughtfully answer my post. I feel so supported. Sometimes we feel guilty because we think we aren’t doing enough to get well. That causes more stress, unfortunately. My nephew is a dear man and only means well, but he really knows nothing about PMR. He heard inflammation and Rheumatica and that’s all he knows. Thank you, Blearyeyed! 😊

[piglette]

As the others say it is steroids that will help, there are numerous so called anti inflammatories around you can buy over the counter. The fact it is manufactured by Nestlé puts me off as well! I am not a Nestlé fan.

[jinasc]

Your nephew will be savvy with computers so give him this link and tell him to watch the DVD on You tube. Especially made for family and friends to help them understand GCA and PMR.

healthunlocked.com/pmrgcauk...

[ProcrastiBaker in reply to jinasc]

Thank you!

[agingfeminist]

Unfortunately we know almost nothing about the mechanisms that cause PMR. Each autoimmune disease has a complex and different malfunction of the immune system. This particular product seems to have some effect on osteoarthritis...no relation to PMR.

At the moment the best that can be done is to take the pred sledge hammer. (and thank goodness we have that). When the cause of PMR is understood then perhaps we might see some monoclonal antibodies target the appropriate bits. Long way off!

[PMRpro Ambassador in reply to agingfeminist]

Not so far off - Actemra works for PMR and there are a few other IL-6 antagonists around. It is cost that is the hurdle although NICE also claims they weren't given long term safety data which is why it is only available for a year in the UK for GCA. Not sure where the problem is - it's been used for 10 years in RA! However - my rheumy expects the cost to fall dramatically in the relatively near future since Humira (for RA) started at a similar price to Actemra, about 15K euros a year, but is now 800 euros. Very affordable ...

[agingfeminist in reply to PMRpro]

thank you so much for this information...much more encouraging than I thought...but I understood it is only effective in about half of PMR cases (perhaps because there is more than one disease lurking here??)

[PMRpro Ambassador in reply to agingfeminist]

The half figure is usually quoted for GCA. There are at least 3 mechanisms that cause the inflammation found in GCA and biologics are extremely specific in their action so will only deal with one of the causes at a time. I haven't seen the finished results of a couple of studies in PMR but it seems to be possibly better than in GCA but it is obvious there are several versions of PMR - are there also different underlying causes of the inflammation.