Medication not affordable anymore

Hi SydneyPerson,

Sorry that this is getting so out of hand for you. It is disgusting that our health system allows people to suffer so much.

I am certainly no doctor, but I realise that your pain is related to your nerves (neuropathic pain) and I wonder if you have ever tried Lyrica. It is the only thing that has worked for me and it is now on the PBS. This means you can get a month's worth for the price of a normal prescription. However, it can be a bit tricky to get used to, so it's a good idea to start with as low a dose as your doctor will allow.

If you have either tried that or your dr thinks it is not worth a try, then I wonder if it might be time to contact the media. It is wonderful what can happen in an election year when someone points out a terrible flaw in an area that causes human suffering.

All the best,

Mary

As Mary has just pointed out if you have exhausted all possible routes in regards to other medications, contact the media it is about the only option left, they don't like negative reviews plastered over the screen on how the health system is failing, in their eyes they have a top notch system, all reports made to them are false. Prime example is the Government website on waiting times and surgery in all public hospitals, one would laugh at what is being displayed if it was not so serious and patients are waiting years not days like reported.
I too had viral meningitis when in my 20's, I was off work with what should have been a simple appendicitis, but no because I did not have the classic symptoms, they put me through a barrage of tests over 6 months, I went down to 45 kilos, spent 3 occasions of 10 days at a time in hospital, until they finally decided to do an exploratory operation only to find they were on the verge of bursting, now I have a scar of 8 inches long down the middle of stomach. It was just after getting over the surgery I came down with meningitis, took them over a week to find what was going on, I did not go back to the same hospital this time, I was placed in a small dark quiet room, the only treatment was spinal taps to drain fluid to keep the pressure from fluid buildup around the brain, a week in hospital and then sent home, with strong painkillers and sleeping tablets. A whole year was wasted.

Don

You are certainly in a difficult situation. If you don't wish to go to the media yet I would suggest writing or ringing your local MP or your state's health minister.

I wish you good luck in finding an affordable medication that works for you.

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SydneyPerson I would not go into detail that far if you were to go to the media, just to point out the fact that you are in pain and the only medication that works is unaffordable and no one is willing to compromise or help in any way, the public doesn't need to know all the details, just a face behind the pain and I can bet there will be many others who will come forward in the same position.

Don

SP, I agree with Don. You don't need to detail anything, just make the comment about the issue regarding cost.

As for Lyrica, it isn't really a strong med as such. I cannot tolerate any strong meds at all, but am able to cope with Lyrica, but only 75mg a day.
However, this drug is okay for most, but for some people, it is a diabolical drug of torture. There are people who are turned into monsters or who become very much suicidal. It has an hallucinating effect too, which can send others over the edge. It is such a shame that you have had this reaction.

I can handle the Lyrica, but Cymbalta makes me so ill that I have not been able to tolerate more than just one tablet. That's all I tried. I refused to go any further.

We have to listen to our bodies and obey when we get certain reactions. And if drugs make you so very ill, then that is a big message to go back to the doctor and ask for a different drug or a plan to get off the drug you are on.

I really hope you can find something that will help you but be cheap enough for you to afford.

Peter

I think I must be lucky my doctor has adjusted and tuned my meds even Dr Atkinson seemed ok with his prescription .
I have been on lyrica for a while no after effects yet so fingers crossed .

Johhno

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Is there a private hospital in your area at all that runs a clinic don't baulk at the price as if you have private health cover it will be most probably cover the vast majority .
The course I have just finished I was out of pocket $300

Johnno

Peter

This may be naughty but politicians suck and blow chunks.

I want to invent a pain transfer device, one that works for 24 hrs I think that would be enough for these owner operators to understand what we mean when we say it hurts and we need help.

:angry: not happy politicians.

Illeatyu

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Sorry that you are having such a bad time SydneyPerson. I agree with you about the stress aspect. Stress will always make pain levels worse. It took me quite a few years to come to terms with that. I was in denial I think! Are you under a pain clinic at a public hospital? They can prescribe medications at PBS prices even when they are not on the PBS. This may not happen in all cases but I was prescribed Lyrica by a public hospital pain clinic until it became available on the PBS. Now my GP can write the prescription. Perhaps have a chat with your Dr. and see what can be done about the Xylocaine ointment. Topical Xylocaine has worked for the pain that can sometimes be persistent after a Shingles attack so it would be worth a try if there is a way that you can access it.

All the best,

Mary

sydney person, i have just caught up on your story and i really feel for you, your condition is certainly very painful and to have a simple medication option that gives at least some relief but is out of reach due to cost, is deplorable! i have had similar issues with medications being reoved from the pbs so that they are only available at much higher cost over the counter etc. in my case there are 2 seperate issues one more troublesome than the other, the first is that after a fall in which i sustained 3 crushde lumbar vertebrae i was found to be osteoporotic, this was due to side effects of medication i had been on for yrs to control chronic leg pain, i have a spinal pump that administers morphine direct to the spinal fluid and one of the side effects is alteration to a variety of pituitary hormones, in my case that led to early menopause but it was never treated hence the osteoporosis now. they decided hrt was the best option for me due to my age and some other factors and intially i was put on a combined hrt medication in tablet form which was fine, we no sooner got the dose right than they removed all the oral hrt options from the PBS leaving only the skin patches, this is great unless one is allergic to the adhesives in the patches and other tapes!- i struggled to use them for several months until the reactions got so severe that i constantly had blisters and sores from the patches and would need to leave them off for days to let things calm down, As a last resort the endocrine guy has now given me the 2 hormones seperately, one is in tablet form and the other a skin gel but it is provong tough tough to get the levels right so i am having troublsome side effects.

the second issue is more severe, as part of my me i have a type of sleep apnoea called central apnoea, its more severe than obstructive apnoea in that the brain just forgets to tel me to breath at times- i am meant to use a machine which is a more advanced version of the sleep apnoea machines- it detects when i do not try to breath and forces a preset volume of airin until i do so myself. the mask i use is a nasal mask, none of the full face masks that work with this machine would get a good seal with my face shape. unfortunately i get bad hayfever and sinus problems especially since i moved home (not my choice, the previous home was demolished and i was relocated) but when the hayfever kicks in i can't breath through my nose at all- i trioed the over the counter sprays and they were not effective, i use one of those sinus rinses that helps a little but the only other option was a prescription nasla spray that was $42 for a month- i'm already paying $275 for the mASK that should be replaced every 6 months as well as supplies to deal with lack of bladder and bowel control. i too am on only the dsp and i struggle every fortnight because od the out of pocket medical expenses- i just cannot afford the $42 a month for medication, i also have to take calcium and vit D supps that i buy over the counter, i need new compression stockings to control lymphodema but can't afford the $120, that means my leg and foot is grossly swollen and very painfull making it hard ffor me to get from wheelchair to bed etc, i can' even afford a shoe that will fit as the specialist fitting would be over $200 a pair (even though one would go stright in the bin as i am an amputee) but all of this means various health problems are getting worse because i cannot afford to treat them. the nasal spray is the real worry as it means i cannot use my breathing machine, my mouth is strapped close when a nasal mask is used and if the nose is to inflammed and swollen to breathe through the machine either alrms or i pull the mask off in my sleep.

there was a time if you needed something that was not on the pbs but either over the counter or private script only, if other alternatives had been tried and failed they could apply for approval to canberra but seems not these days- even my respiratory specialist could not help, he suggested referral to a public hospital but i dont think that will work as my endocrinologist was in a public hospital clinic and he could not do anything wheni had the issues with the skin patches! that is a definite change though as i know at one time i was getting lyrica through the pain unit at a public hopital when it was not approved for chronic pain (on the pbs) i think they used to fund it themselves as i had to get it from them not my GP

i understand you not wanting to go to the media due to the personal nature of your condition but have you considered your local mp or your states health ombudsmans office. those are the options i intend to try as i am tired of robbing peter to pay paul with all my bills, not being ableto cover them anyway and ultimately having to deal with the consequence of undertreatment of treatable problems. Stupid thing is though that not having another option of hrt available for those who have skin allergies means that some of us are aat greater risk of osteoportic fractures and the associated cost- my back pain has been dreaful since those fractures- i cannot stand straight or lie flat, i am in a sitting position basically all the time and can no longer use my prosthetic leg etc, if sleep apnoea is not adequately treated is affects fatigue levels which are already high due to my MS but increase the risk of heart problems and even stroke- hard to see how they are saving money

going back to the puedendal neuralgia, i am sure you have been though all the options but back when i was still nursing i seem to remember reading where some kind of capsasin cream was used to reduce pain- it sticks in my mind as it seem rather counter intuitive to use a product similar to pepper spray in such as sensitive area so i could be very wrong but just wondered if you had heard anything along those lines

hope things improve soon, i really reckon the ombudsman might be the way to go next

Hi Sydney Person,
Just a thought,wouldn't this be used for some Dental Procedures?Have you tried asking your dentist?
My daughter had what you had in the 90s also my sister-both still suffer.My daughter has chronic RA(recently diagnosed and first TNF biologic they put her on -made it all return...so she gave that away...side effects are horrendous and that's a Govt funded $30k per annum drug.She took it for 10 weeks.)Good luck with your search...what about Vets?They use it also??