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Pegloticase (trade name Krystexxa) questions

Posted , 3 users are following.

eddiegout
eddiegout

Pegloticase (trade name Krystexxa) questions:

Can anyone relate their

(1) experiences, side effect, especially with breathing issues - and (2) pricing per session under blue cross blue shield?

(I am allergic to the other gout drugs - and have had a very bad experience with another iv drip drug and seriously doubt I will ever use this drug -  but would like to hear 1st hand experiences.)

Still looking for that magic - thank you for your help.

0 likes, 7 replies

7 Replies

  • rustygecko
    rustygecko eddiegout

    Posted

    All I can tell you is what the UK regulatory authorities say: it’s an effective drug initially in all patients but that it becomes less effective in many patients quite quickly (not all). 

    It was rejected in the UK for use on the grounds that it costs £54,000 per yea of treatment 

    It was refused a marketing lisence in the E.U. but I don’t know why. 

    Interestingly the technology is extraordinary in that what they have done is genetically manufactured a drug which would naturally be produced by pigs to reduce blood urate!

    I assume you have bad tophi- I wish you good health.

  • andrew41895
    andrew41895 eddiegout

    Posted

    Blue Cross blue shield has many different tiers of prescription drug pricing depending on your plan, your provider website will have the exact pricing. List price is $60K / year in the US.
  • jacqueline01135
    jacqueline01135 eddiegout

    Posted

    Try  Bromelain ,,for pain,, and Cherry Effect .to break up the crystals ..No side effects, as they are herbal .
    • jacqueline01135
      jacqueline01135

      Posted

      Just noticed that you are talking dollars /the tablets are in the U.K, 
    • rustygecko
      rustygecko jacqueline01135

      Posted

      This drug is for very serious cases with tophi. Do you think the herbs would work for that? Do the herbs keep your symptoms under control or do they keep the blood urate low?
    • andrew41895
      andrew41895 rustygecko

      Posted

      I think this isn't a question that can't be answered definitively without testing.

      My experience is Resv eratrol is powerful uric acid reducer, but no one has any financial incentive to do a study on this, unfortunately.

      Bromelain is a set of enzymes that metabolize Uric acid, but I don't think its powerful enough to reduce blood Urate to a safe level long term. I view it as similar to colchicine, for short term relief.

  • rustygecko
    rustygecko eddiegout

    Posted

    As I understand it the drug can be used on private prescription in the UK but the drug isn’t available on the NHS due to a lack of long-term efficacy compared to the price.

    Judging by the lack of responses it seems not many people have tried it (not surprising at £54k a year compared to allopurinol 5,400 times cheaper!)

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