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Grace
Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 396 |
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Posted: Sat Mar 26th, 2005 21:40 |
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I forgot to tell the rest of the process with pfizer sas.When they receive your application with a lot of medical info from your doc .Pfizer than sends it to the TGA's sas to get approval for them to supple it to you.
I paid inter-apotheke $683 for 4 boxes ,soon i am going to order 8 boxes.
It would be useful if they had a order form .
My medical insurance, medibank private said I couldn't claim overseas medicine.I will try again and thanks Jonathan.
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Betty C
Member in Phase 3
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Posted: Sun Mar 27th, 2005 05:25 |
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Barb,
Since notifying you of the various attempts to get Benicar into Australia (see yr input above, dated 29th Nov. '04), and realizing that CFS is more widely known of than Sarcoidosis, Don wrote to our P.M. John Howard, on 3rd March last, emphasising that Chronic Fatigue Patients are, with the Sarcoidosis patients, sending to US for Benicar and Germany for Votum (both the same product of Olmesartan Medoxomil)
On the 16th March last, Mr. Howard's office replied, telling us they had handed the letter onto the Minister for Health and Ageing, the Hon. Tony Abbott MP, for attention. (Mr. Abbott will now have 2 letters from us re this subject!)
Jonathan, Tobi, Rose et al,
I did not realize our Health Fund may cover some of the cost of importing Votum. (showing receipts etc). Will ring my Health Fund, H.C.F on Tuesday next. H.C.F, a well known Sydney Health Fund, has recently taken over our Melb. I.O.R. health fund. I think the first time we ordered the Votum from Munich, a receipt was sent in post other than with the parcel, but since then we don't seem to get a receipt.
Betty
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dx Sarc-2 skin biop.3/99; Prednisolone 3 1/2yrs; steroid myopathy 15mths; 8/02=1,25D=36.19; 25D= 14; 3/04 1,25D=15; 25D=14.4; 7/05 1,25D= 25; 25D= 9.76; Votum tid; MP/phase1,Nov'02; phase2,Oct'03; phase3,June'04. Mild herxing.
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Betty C
Member in Phase 3
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Posted: Wed Mar 30th, 2005 05:08 |
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With our cost for importing Votum from Munich, with an Australian Doctor's prescription, we will be able to claim a rebate for 2004/2005 Tax Year.
Quote "Australian Resident/Taxpayers
A rebate of medical expenses, if they exceed a threshold is allowable. For year 2002/2003 and later years, the rebate is calculated as 20% of the excess of net medical expenses over the threshold of $1,500. In earlier years the threshold was $1,250. To qualify for the rebate, medical expenses must be paid by the resident/taxpayer, in respect of himself/herself, or a resident dependent. However it is not necessary that the payments be made to a resident or that they be paid in Australia. Therefore, medical expenses paid during an overseas trip may be rebatable."
Betty C
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dx Sarc-2 skin biop.3/99; Prednisolone 3 1/2yrs; steroid myopathy 15mths; 8/02=1,25D=36.19; 25D= 14; 3/04 1,25D=15; 25D=14.4; 7/05 1,25D= 25; 25D= 9.76; Votum tid; MP/phase1,Nov'02; phase2,Oct'03; phase3,June'04. Mild herxing.
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Ralph
Member in Phase 3
| Joined: | Wed Dec 8th, 2004 |
| Location: | Sydney, Australia |
| Posts: | 303 |
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Posted: Sat Apr 2nd, 2005 03:50 |
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Hi Grace,
Just to let you know I to have sent a letter to Health Minister Abbott hoping he might let the Benicar into Australia.We all must do our bit to pressure Politicians and the Medical Fraternity to seek new alternatives to help people with Sarc etc..like the MP.
regards,
Ralph
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Lungsarc1/3/05fatigue,bod/ache,irr/heartbt/ no meds|getting/sun,Bolle's only, BeniCom 2/4/06 q6h Start Ph 3 12-2-07. Jan 07 25D 10.8,Oct-25D 8 1,25-23Dec07 25D-16.8 1,25-81 22 Jan 09 25D-24 1,25-45,Jan10 25D-17 1,25-25 No Antibiotics from 3-2-10
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Grace
Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 396 |
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Posted: Mon Apr 25th, 2005 00:32 |
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I send to inter-apothotheke a fax for my second lot of votum.After 2weeks my credit account had not been debited.I email them and they said, that had not receive a fax, my end sent ok.So after a mad panic, still had 3wks left of votum.I sent another fax and email later to see if they receive it.They had and I got votum in 10days. I would not rely on getting it so quick,but think customs may be quicker the next time orders as they may keep a record.
lesson 1- email them to confirm that they received fax order
I had also ordered quercetin from iherb,they only use courier.If supplement and etc comes through quarantine the gov charges a fee and and the courier charges another fee for a 'runner' to find out what the supplement is.These cost are then charge to the lucky customer $100+. If sent by mail the gov pays for it.
lesson 2-use mail when you can
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Mon Apr 25th, 2005 00:53 |
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Reminder to All: in case of any unexpected delays....
Always make sure to have an adequate supply ahead of Benicar..
remembering to take into account that you may need to take it Q4H at any time.
and carry some in a container with you wherever you go ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Therese
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| Joined: | Sat Jun 4th, 2005 |
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Posted: Tue Jun 14th, 2005 05:29 |
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Hello Grace,
Iwas wondering if you've had any luck with getting your Benicar using the Special Access Scheme as yet? Or do you know of anyone else who has?
Here's hoping, Therese
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Grace
Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 396 |
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Posted: Wed Jun 15th, 2005 00:19 |
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therese,
no I haven't.they required a lot of info from docs.i didn't want to wait to start mp.
grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Grace
Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 396 |
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Posted: Wed Jul 13th, 2005 20:57 |
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I don't want to mislead anyone
After talking to pfizer and HIC it seems that 'benicar' has been/gone through
the TGA and is now at PBS.
Althought pfizer stated it is not on the market yet as they have not yet marketed it.
TGA said there are some restrictions ie it is not too be exported from Australia
as other overseas companies have sale rights etc.
try not to get toooo excited ,but it looks good
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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robyno
Member in Phase 3
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Posted: Thu Jul 21st, 2005 05:46 |
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I have just come back from my Mediback Private office with a big fat "no go" when I asked if we could claim Benicar that is purchased from Germany. I'm not impressed - we have been with the fund for over 20 years and they have let us down when we need them the most.
Can anyone tell me which Australian health funds allow a rebate? I really feel like taking my business elsewhere (though no-one would probably take us on now!)?
Ta, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Tobi
Member
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Posted: Thu Jul 21st, 2005 05:57 |
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Robyn,
I think it is pretty standard that the health funds don't cover medicines not available in this country - We're with HBA - same story. Jono (this link on this thread if I remember) said his mother's health fund did allow a rebate - that is a teacher's fund and they seem to look after members particularly well.
Tobi
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CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Thu Jul 21st, 2005 06:21 |
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Robyn
re Jono says about claiming from his insurance, you may wish to private message him.. please let us know if you find anything..
Thank you, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Ralph
Member in Phase 3
| Joined: | Wed Dec 8th, 2004 |
| Location: | Sydney, Australia |
| Posts: | 303 |
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Posted: Sat Jul 23rd, 2005 23:36 |
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Hi Grace,
Just to let you know I to have written to the PM and Tony Abbott and there replies on the 17-5-04 was that it was up to Pfizer to bring forward forward this drug for registration at TGA.Your info that this has happened is great news.
I have today sent him a email to try and expidite the next stage of this process.I will also try to get some political support Ive established recently for a push.
As for Robyno, I am with HCF and I have found them to be a good fund.They paid for my Bolle's with a doctors letter about my condition.I have spoken to them about Benicar.They just said when you buy it put in a claim with your doctors support letter and we will consider it.
all the best,
ralph
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Lungsarc1/3/05fatigue,bod/ache,irr/heartbt/ no meds|getting/sun,Bolle's only, BeniCom 2/4/06 q6h Start Ph 3 12-2-07. Jan 07 25D 10.8,Oct-25D 8 1,25-23Dec07 25D-16.8 1,25-81 22 Jan 09 25D-24 1,25-45,Jan10 25D-17 1,25-25 No Antibiotics from 3-2-10
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Moxie
Guests visiting Phase 1/2/3
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Posted: Sun Jul 24th, 2005 05:14 |
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I spoke with Jacqueline Everett at Pfizer (02 9850 3934) who looks after the Special Access Scheme for that company. She said I would need a Category B clearance from the TGA http://www.tga.gov.au/docs/html/sasinfo.htm. If that was successful, then Pfizer would enable me access to the drug on their SAS.
My doctor kindly applied for Category B and this is the reply from TGA.
Dear Dr D
I am writing with regard to your application June 6th to supply olmesartan medomixal for the treatment of chronic fatigue syndrome suffered by your patient, JW (31.7.46). In order to further assess this application I request that you provide the following information:
1. Please provide evidence to support the efficacy and safety of olmesartan in the treatment of chronic fatigue syndrome.
2. Please indicate whether JW has any contraindications to the use of olmesartan.
3. Please indicate what other registered therapies have been used to treat JW's chronic fatigue syndrome, particularly with reference to the Australian College of Physicians 2002 Clinical Guidelines for the treatment of Chronic Fatigue Syndrome. Yours sincerely
Dr Andrew Pengilley
Head, EU 3
This is the CFS Guidelines from College of Physicians
http://www.mja.com.au/public/guides/cfs/cfs2.html
and this is their management of CFS recommendations.
http://www.mja.com.au/public/guides/cfs/cfs2.html#elementId-1176206
which really amounts to a whole lot of mumbo jumbo mentioning;
1. graded exercise
2. cognitive behavioural therapy
3. antidepressants
I am keen to follow up on this letter and can certainly deal with my contraindications in the use of olmesartan, the registered therapies from the Guidelines but I wonder if you can point me to any papers on CFS and the use of Olemsartan? Mostly all the papers on MP are about sarcoidosis and I would appreciate any help in unloading an overwhelming supply of data to Dr Pengilley - so much that it will take up most of his lunch and tea breaks!!
Thanks
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CFS 25 years - FMS. Benicar 3 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 45nmol/L (18ng/ml) 1,25 D 92pmol/L (38.3pg/ml)
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Moxie
Guests visiting Phase 1/2/3
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Posted: Thu Aug 4th, 2005 05:44 |
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No response on this? (the post above)
I guess in Australia, it will be the sarcoidosis people who can drive the changes. There is much information that can be quoted to TGA to see if we can get the ball rolling. It does mean though that people need to get their doctors to apply to the TGA (http://www.tga.gov.au/docs/html/sasinfo.htm.) to provide the TGA with the peer reviewed paper printouts.Last edited on Fri Aug 5th, 2005 00:14 by
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CFS 25 years - FMS. Benicar 3 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 45nmol/L (18ng/ml) 1,25 D 92pmol/L (38.3pg/ml)
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Aug 4th, 2005 08:44 |
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Moxie,
I have given a conference paper at AACFS 2004, but there is nothing else available in the way of peer-reviewed papers. The CFS practitioners are still arguing in disarray, with even the CFS patient-advocates are in disarray, and it is therefore far too early (IMO) for peer-reviewed papers to be generated. Give it another 3-5 years, I guess.
I do know that another Australian Physician has been trying to get some action on this issue, and I have been helping him as much as I can. Hopefully something good will come of these efforts, although, as I said, while the disease is not recognized as a systemic disease, patients will be fighting uphill to get proper treatment.
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Tam
Member
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Posted: Tue Aug 16th, 2005 15:37 |
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Hi Grace,
Thanks so much for all your work on finding out the status with Benicar. My name is Tam, I'm 27 and I just got diagnosed with Sarcoid too... I'm in the States but returning to Melbourne soon.
I noticed your thread about Benicar now being at the PGS - Have you heard anything further on this? Just wondering where we are at with it all so I can put some effort in too!
Thanks Grace, Tam :-))
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Sarcoidosis Diag. July 22, 2005. Lung and Erythsum Nodosum. Stage 2. No meds. Researching MP
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Grace
Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 396 |
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Posted: Tue Aug 16th, 2005 23:16 |
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Tam
no I haven't heard anything more.
I don't know if you had insurance for overseas,but if i was you i would bring as much as you can home......for your own use of course
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Tam
Member
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Posted: Wed Aug 17th, 2005 01:46 |
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Hi there Tobi,
Coming home to Melb in a few months, and wanted to ask you about the ordering of Benicar... was that about $620 for three boxes that are 40milligrams? just wondering!
Thanks, tam. :-)
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Sarcoidosis Diag. July 22, 2005. Lung and Erythsum Nodosum. Stage 2. No meds. Researching MP
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Wed Aug 17th, 2005 01:53 |
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Tam,
as per BENICAR: Where to purchase Benicar for self-pay members that is the approximate cost of 3 boxes of 98 x 40mg tablets priority airmail to Australia.. the contact details of the Pharmacy are also in the post.... for you to email them is best, because of the language barrier with phoning..
Barb ..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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