So I put my normal prescription in to my via a delivery app and got a text message back from the GP saying that they had had a look at my medicines and stopped some and changed some. Eventually got an appointment with the GP who had done so to try and work out what was going on. The GP literally said to me that he was not sure he could justify the extra £2 in prescribing gastric resistant sulfasalazine so I would be getting the normal stuff. He then said had I thought about buying over the counter pain killers rather than taking naproxen. Which I take like 3 times a week if that. He then said I no longer fit the criteria for Vitamin D supplements, something the hospital tested me for and started me on as that would say him and extra £5 a month. I am shocked and sad that I have been made to feel like I cost the NHS too much money. Also a bit annoyed that I now have to buy some of the drugs which will cost me! I had one of those prescription certificates in place not sure it’s worth it now
GP re evaluation : So I put my normal prescription in... - NRAS
GP re evaluation
WOW Since when has the dr decided you cost too much money to be prescribed drugs you need. I wish i could advise you how to go about appealing his decision, but sadly i don't. xxxx
My only suggestion is to contact your rheumatology team and ask them to write to your GP. Might also be worth calling the NRAS helpline.
Wow! That’s awful. Wonder if he’s balanced his change in your gastric resistant sulphasalazine with how much it will cost him in meds and possible hospital treatment for your gut - I’m assuming that’s why you are taking the gastric resistant variety so if he does that he might not be saving himself all that much in the long run.apart from that why change your meds when you are doing ok on them. I’d speak to the rheumy team who prescribed the drugs your doctor has changed. Plus I’d be tempted to write to the GP and ti my MP just to stir things up a bit.
I'd be very upset if it was me - particularly about the Sulphasalzine.
Mine is prescribed by the rheumy and provided by the hospital pharmacy. There was mention on here ages ago about some people having problems with the non-gastric resistant version (supply problems) and when I asked the pharmacy, they said that they only ever supplied the gastric resistant one.
I would definitely query this with the surgery and contact your rheumy team if you don't get a positive response. Maybe the surgery is having a budget drive and the GP was being over-zealous. To be fair, there may be other patients having prescriptions they don't really need so you might need to speak up to point out that yours are necessary.
Look at it this way….at least we live in a country where we have access to all sorts of drugs for the cost of a prescription.I once forgot my BP pills when I went on holiday….it cost me £27 for one month’s prescription!
Yes but it's not good to be put onto a cheaper drug if it doesn't work for you/causes unpleasant side effects. I'm all for the NHS being financially efficient but not at the expense of patient care.
Maybe different makes will work……. I know I have taken some brands of a drug for years and then it’s been changed but it’s made no difference. I think these days we’re going to have to be willing to try cheaper drugs…. The way things are going we aren’t going to get any drugs …because they’re aren’t going to be enough doctors to prescribe them.
All my rheumy nurses have been going off on prescribing courses and coming back and thinking that they are pharmacists…maybe they will be more thoughtful when they prescribe?
I'm always happy to try cheaper things as long as they play their part and are willing to change me back if it doesn't suit 😁
Exactly..when I was first prescribed statins the first type did not suit me at all…My doctor changed the brand & they were fine..been on them 30 years & have good cholesterol readings.But some people do get their minds set on a certain drug they have read about…look how eager people were,& some still are, to go on Biologics, when they were actually doing fine on the drugs they were .
But truth be known …a lot of older drugs are often much safer than taking a leap in the dark on to another drug….just because it’s new.
I bet we have all started a new Dmard & a few months down the line…wished we’d stayed on the original?
I’m all for trying different, cheaper brands to save the NHS money and very happily switch between brands of enteric coated sulphasalazine, however I would not be happy to switch to non-coated ones as they could cause all sorts of tummy problems. Likewise I have had several different brands of generic naproxen but the most similar over the counter drug is ibuprofen which doesn’t work nearly so well for me. I totally understand where Whezziewhoozle is coming from.
Gosh , well maybe that's efficient nhs management but grim!!
But let’s face it…until recently some patients over 60 with free prescriptions were demanding paracetamol on prescription…..which was a complete waste of NHS money.I know it did go up to £1 recently for a short while..but now it is back in every supermarket …. down to less than 50p.
After all we pay for the NHS in a roundabout way through our taxes and if doctors just prescribed freely every thing they are asked for …..we will end up paying for other people’s fancies ….by paying more taxes.
Grim as in that is difficult for wheezie, I was thinking if how she felt personally about it
I buy my aspirin which is on my repeat form. I prefer the enteric coated to disolvable. It costs me a whole £1.50 per month. Goodness knows what it would cost NHS if I decided not to!
By the way it's to go along with my heart meds not for RA
👍💜
If only everybody thought that way.
I agree …if you can buy something OTC….why faff about with a prescription…being an oldie I get my scrips free…but I couldn’t be bothered to go & collect a prescription, when I could pick it up in the supermarket.I think it,’ crazy that the NHS is now delivering prescription drugs to anyone who asks…..obviously for those who can’t get out it is necessary…but not just because you are too idle to pop to the pharmacy.
After all somebody is paying for that service….
I have had drugs delivered when I had Labrynthitis & couldn’t stand up….but otherwise a trip out does me good.
This is the way things are going despite ‘we are not privatising the NHS’ chanting.…. It’s grim…. Btw… I would argue for the ‘coated’ sulphasalazine… your GP has no right to change your RA meds as he is not an expert. Remind him RA affects all internal organs. He will have to prescribe you a ‘stomach liner’ med such as omeprazole which would surely cost more… idiot.
Absolutley challenge these decisions, the GP is boosting his own profits over patient care. Why do some people choose medicine as a career ?
I agree Crop Lady, this GP is not an expert. I have to have gastro resistant sulphasalazine as prescribed by my rheumatologist to avoid gut problems and I would be extremely unhappy if my GP tried to change them and would tell him no you will not change it without first discussing it with my rheumatologist.
A friend of mine now has three tummy ulcers. Doc thinks it’s from non coated sulfasalazine so make enquiries ASAP💐
Individual profit for the practice over patient care.
Thanks guys, I will work out a way of sorting it out. Just all came as a bit of a shock and really hate the admin of having a health condition. It’s just extra things on the to do list.
The GP had informed me that it’s not ‘linear’ between the hospital and surgery so although the hospital can suggest a medicine it’s up to them if they prescribe it ….
Going to leave it a week or so and then deal when I am not so emotionally charged over it all.
Yes it's been a bit of a shock. They sometimes catch you unawares don't they. Gather yourself like we all do , and keep strong xxx
Being ill is a full time job.. 🤬
Be assertive and polite but fight on! Like the advert says …. Because you are worth it💐happy Easter 🐣
My husband had his hayfever tablets stopped by GP a few years ago and has to buy them over the counter. He had an annual prepayment card and yet his mother in a different county still gets hers free from GP. Postcode lottery!
Apart from anything else you should have had a proper consultation about your drugs, rather than being told what would be dropped without your input. You know your own body best. At the moment my doctors are really good in relation to precribing. I'm really sorry that you have had this to deal with. Take care, xx
That’s rubbish isn’t it & not fair just to change without consultation with yourself. Everything seems to be about cut backs rather than patients health unfortunately. I’ve been on B12 injections since 2011 but were stopped ( was informed by letter) at the beginning of lockdown. My B12 has dropped considerably but I’m still being refused. Also on blood monitoring when I got my results there was no CRP result. When I asked why my GP said it costs £50 a time & dosnt need doing right now!
But your GP is definitely penny pinching for goodness sake. X
What?! That doesn't sound right. CRP costs about £2. I agree blood tests shouldn't be done unless completely necessary, for lots of reasons, but they need to look at the bigger picture.
By the way, I don't know if you've taken any otc B12 supplements but the sublingual spray is meant to be better than tablets - worked for me. Still, you should be getting injections.
I think its the NHS driving the cost cutting of GP's and some is understandable but some is just so hard to understand. I've never had an issue as when the GP changed my Vit D to tablets it upset my stomach so I asked why had they changed from Ad Cal chewy tablets? the answer was cost but they put the chewy back on prescription and only that was to be prescribed. A friend of mine gets paracetamol on prescription not for cost but because a doctor can prescribe in the hundreds and she doesn't drive so getting enough each week for her OA is really difficult so its prescribed and can be picked up at the Dispensary so saving her a lot of problems. But cost cutting is now just part of the problems of the NHS now, I think its worse that telephone triage is probably here to stay. I don't get that at all, the vet is open, the dentist and the optician all nearly back to normal and I really don't believe it's just down to a shortage of doctors. Why haven't we got specialist nurses in surgeries, more community health centres and why is it possible to see a private GP the same day for £70 for half hour yet that GP has a week wait for his NHS patients. Not rocket science to answer that ? or that me being cynical.
I have a very good GP practice, I phoned for a consultation regarding my prescriptions (all out of synch) and to discuss repeated cysts that I am experiencing. I asked for a telephone call, but was offered F2F a few days later, which I took. My practice is large with a mixed catchment area, with many retired people. I found the F2F beneficial and was pleased that I took it, it is so much easier to speak F2F.
My practice charge for private form filling, insurance claims and so on...but have posters on their wall and information screens informing us that no GP benefits individually from these charges. Rather they fund a part time nurse and receptionist, adding to the quality of patient care. My previous practice was very different, GPs charging £130 for form filling, money straight into their pockets. They are still not offering many F2F appointments either. It says a lot about the culture of the practice.
As my GP friend says, if you cannot live comfortably on a GPs salary you are doing something wrong.
I do seem to be in a minority with my excellent practice. Most people I know cannot get a F2F appointment for love nor money. As a previous GPs wife I understand that many GPs are using Covid as a permanent move to remote consultations which they have wanted for a while ( and is supported by the BMA). Yet all patient care begins with observation, difficult on the end of a phone.
GPs are a rarity in that they are paid up front, per capita, before providing care, whereas my excellent NHS dentist is paid after he provides care to me. There is no incentive for the GP to provide better care other than individual morals and unfortunately the culture has changed quite radically in the past generation, they get a handsome salary for taking phone calls at home and providing a mediocre service.
Our practice has given superb service to my husband from blood test to consultant a week and then MRI and biopsy this week. And to be honest I've not needed to see one in past two years, its just that Econsult is so blooming hard to fill without repeating yourself at least three times. Our practice now opens at 7.30 and by 8.09 all appointments even phone ones had gone and it was at their request by text I needed the appointment. Even worse I didn't need the appointment as I'd had the blood test and a sigmoidoscopy and it was a case of not reading notes with a receptionist saying you need to speak to a GP. I could have chucked the phone across the room. Moreover the GP didn't have a reply to this text facility on their text. So I ended up officially (not about GP's but a system problem) complaining as its the third time same problem and the GP then rang to say that the coding of some reports is wrong and ignore the texts. They are now allowing people to respond to texts and so they do listen. I shouldn't moan really but as the GP said they are wasting their own time as well as patients and should not send texts saying "you have not etc ??? when in fact they have had the blood tests just not been put on the system properly and no one checked. As she said some just ignore the texts but it wasn't acceptable to send such terse messages to everyone especially when they do have an excellent record of getting all the regular stuff done. x I did point out that I've retired only ever had one doctors practice since birth and really objected to the texts as in 68 years never missed a blood test or even failed to attend an appointment.
In Scotland many of the NHS, IT systems are old and cannot cope with modern demands. I tend to get a phone call from a receptionist saying 'stop all meds until you speak to a Dr about your bloods'.
Then I have to speak to the Dr by phone, saying i haven't stopped my meds, my bloods are fine, they have always been like this, even pre med days. Please read the haematologist report.
Otherwise they are pretty good. But what a waste of time for everyone on a regular basis.
Yes it seems like the lack of investment in technology is the root of the problem and the GP told me the NHS spent over 9million just before covid, developing a system that never worked and they could just have burnt the money. They've now as a practice bought a new telephone system that now has a better information link for booking blood tests so hopefully a dedicated system will help. And changed telephone provider because they were unable to ring out while people rang in and that caused a lot of the delays. It seems the accountant saved money alright but shot the GP's in their feet.
Nope..it’s all down to the GP contract which virtually allows them to do what they feel like…& as I understand…it would not only take an Act of Parliament to change that contract…,but the GPs would have to agree.Anyone know any turkeys who would vote for Christmas…...or any GPs. who would accept a new contract?
Can you contact your rheumatology team. I would definitely argue that the sulphasalizine excuse spelling could be less effective and Vit D supplements are going to be important.Im well aware the nhs is falling apart but saving £10 a mth on you isn't going to save it.
Remember the L'Oreal advert you are worth it....and so much more.
I was prescribed vit D for 3 months having been found to be severely deficient at diagnosis, then told I would have to buy my own even though I was still found to be significantly deficient; it’s increasingly common with a variety of meds, and not just those that are on ‘the list’ that came out a few years back of things they were no longer going to prescribe and patients would need to pay for.
I’m not defending your GP’s actions because I think it’s highly inappropriate to suggest taking you off a prescription only med (POM) purely on cost grounds, which is what it seems like they’re doing here, but anything the GP writes the script for, even if it’s at a consultant’s recommendation or request, the cost of the med comes out of the surgery’s budget. There are shared care agreements for DMARDs whereby the GP can recoup the cost of the med from the hospital, but that’s it. As everything else gets paid for out of the surgery coffers, I’m disappointed but not that surprised at your current experience.
If it were me, I’d speak to rheum and explain to them what’s going on, ask them if they feel it’s appropriate, and ask them to step in if not. I’d also consider making a formal complaint (not so much about the changes, but the way it was done), but at the very least, I’d speak to the practice manager and ask them to explain who the GP is consulting with that’s qualified to advise them on altering specialist treatment plans.
An excellent reply Charlie, uninformed, profit driven decisions such as this seems to be do require to be challenged.
Quite often..if you pay for prescriptions… pills like Vitamins are cheaper to buy OTC than to pay for a prescription.
For sure, but as you say, only if you live in England and pay for scripts. Having lived in Wales for years, where free prescriptions come at least partially at the cost of a good, safe health service, I don’t object to paying for things myself in principle, at all, and go out of my way to save the NHS money wherever I can. I think the service was right to stop prescribing basics like paracetamol outside of exceptional circumstances, but as someone benefit dependent now living in England that doesn’t pay for prescriptions, these costs do add up. When I also regularly see the eye-watering pharmaceutical waste that goes on in clinical settings, particularly in hospitals, I think that should be tackled with as much determination as patients being asked to purchase items they’re being told they clinically need.
The workers involved in Nationalised Industries get no reward for saving …..it’s a bit too late to start now anyway…..after all most people don’t think it through…then complain when taxes go up….if only it was more understood…it’s our money that is wasted ….it comes out of our pockets…..for some reason the NHS Mantra, From Cradle to Grave is still thought by some to really still apply to the NHS.Even when studies have been carried out & prove how health systems in mainland Europe perform better than our NHS…..work better on State Retirement pensions too… there is none so deaf as those who will not hear….the NHS. Is a sacred cow….I have often wondered what happened to that original bovine?
I wouldn't accept these changes Whezzie. Your rheumatologist had his reasons for prescribing gastro resistant as did mine.
I understand that it's "shared care" between rheumatologist and doctor but I thought it was the rheumatologist who was the arbiter of your appropriate drugs . My rheumatologist has just changed from meloxicam to naproxen , as he thinks it will work better for me . At the moment this appears to be the case - I wouldn't expect my GP to change it back for cost purposes .
That’s appalling, and a real shock that your now seen as an expense to your drs. Nothing more to be said really!
Hello Whezziewhoozie.I live in Scotland and it is the Consultant Rheumatologist and not the GP who makes decisions regarding medications for me. I am on my 5th Biological and I take Sulfasalazine too. My hospital arranges the Biological and the GP issues the Sulfasalazine on the direction of the Consultant. If there is any question about anything to do with my Inflammatory diseases or medications then the GP is able to e-mail both the Consultant and my Specialist Nurse for guidance. Your GP is not practicing his oath, first do no harm! If your practice is counting the pennies at the cost to your health than that is not acceptable. His lack of knowledge is somewhat scary. Many people with RA or other Inflammatory disease have stomach issues as the bowel is often affected and gradual and supportive introductions to new medicines are essential for the patient.
The reason for Gastro-Resistant tablets is to prevent any potential issues for you, and any issues you do acquire will cost the NHS far more than the pennies he thinks he's saving. He's not a specialist and should be able to understand that? I think you should be raising this with your Health Authority or MP. As is you don't have enough to deal with!!
I hope you get this sorted and my best wishes to you.
Can I just add it is vital to do the blood tests needed for RA especially with tummy protectors like Omeprazole that is not a medication without risk.
It does sound as if the practice has recently been told that they are above average in their area for prescribing costs. And they are frantically scrabbling about for savings. It should not have been done without, at least, a telephone consultation with you.
But if we can save the NHS some money, I do feel that I should. I can afford to buy my hay fever stuff over the counter, and my Vit D, so I do. Everything else is prescription only so have to come from the NHS. The NHS does not have enough money to do its job properly unfortunately. And lots of people cannot afford to buy their medication, so it should be available for them when needed.
I would move to another surgery and report that surgery to your rheumatology team. I would also write to my MP.
What a damn cheek! If the hospital has prescribed I thought only they could change it…. That is what I was told last year. I am sure you are worth an extra 7 quid! Outrageous! Complain to manager and write to your MP. I am on speed dial now with mine. Happy Easter RAWARRIOR. Keep up the good fight 💐
That's terrible! They should not have changed this without consulting you.
When I took sulfasalazine I'm pretty sure the non-enteric coated ones were only meant for people with inflammatory bowel disease. You should check this with the rheumatologist as presumably they are the ones who put you on it and the GP shouldn't be changing your specialist's plan.
With vitamin D unless you are still deficient then it's right that they are not meant to prescribe supplements.
I know the NHS should be cutting back on waste but keeping people well and minimising medication side effects isn't waste! Was this GP perhaps a bit inexperienced?
Pretty sure you're right re inflammatory bowel disease and non coated sulfasalazine. My pharmacy dispensed the non coated by mistake, I read all the info on the leaflet, and decided I did need to get it changed.
I think you can buy Naproxen over the counter. A problem with it is that it causes a stomach upset and then the GP has to prescribe Omeprazole though it can be bought over the counter in 10 mg tablets. GPs do not normally prescribe Vit D tablets apart from an initial booster dose.
Most of this is money saving but I think all GPs are at it. Mine would not prescribe Fexofenadine which is a prescription anti histamine though I have found a source on the internet without a prescription - he made a point of saying it was expensive and most people buy over the counter anti histamines. I also could not get HRT but I have found that Asda sells it on line and it is not too expensive. They really are penny pinching and half the time it is false economy.
Naproxen can’t be bought over the counter, it’s a prescription only drug.
I have just been on line and three websites selling it came up immediately:
·
01603 931600
01695 474433
There are plenty of others. I had to pay for mine along with Omeprazole.
I am also having to buy Tibolone (HRT) on line and also Fexofenadine (anti histamines) despite specialists both private and NHS hospitals telling the GP that I need them. I also have to buy Vit D - my reading is only 32 with a normal range of 50 to 200 - virtually everybody does. I think it is the same for most people. GPs don't want to prescribe Omeprazole either which many need to take along with Naproxen. It does not just end with the cost of the one tablet. They have a budget and they have to make it go round so it seems the most serious conditions take priority and also drugs that can be obtained without prescription, unfortunately.
From the chemist-4-u link above. The links above only give you access to a private online consultation to get a prescription.
I buy Tibolone HRT and Fexofenadine on line. The doctor approval is a formality and does not cost anything. If you had to pay for an on-line consultation, then you may as well see a doctor privately. Most cash health plans include a private GP service but you would have to pay for the prescriptions. The other alternative is to change NHS doctors but another may not prescribe it either - they are not obliged to prescribe anything as they have a budget which they have to stretch to cover all patients, and demand can outstrip it.
I do understand GPs have budgets but that doesn't mean people with long term health conditions should have to pay privately for medicines that a hospital consultant has said they need. I have never asked for a prescription for paracetamol or other drugs I can buy relatively cheaply over the counter. However, I take naproxen twice a day as recommended by my rheumatologist, thankfully my GPs have never questioned it, but if I did have to pay privately the Chemist-4-u site says prices start from £29.99 for 28 tablets so that would be nearly £60 a month for me. Many people couldn't afford that much. I have looked at private health insurance as my husband has it through his work and could add me to his plan but I decided it wasn't worth it as anything to do with RA was excluded.
I have a few long-term health conditions, and had others in the past, for which I have had to pay. Both an NHS chest specialist and an NHS allergy clinic said I should take Fexofenadine every day all year but the GP will not prescribe it. I have not been able to get Levothyroxine for 20 years because the GP would not prescribe it and I developed a multi nodular goitre and serious health problems.
I had to pay for Naproxen when I was diagnosed with RA but I found it useless and needed stronger relief - it is a very mild pain killer. I had a bunion op on my foot shortly afterwards and though I was given a bagful of pain relief - stronger than Naproxen - I did not take anything as I did not need it so I do have a high pain tolerance level. I found the side effects of Naproxen (stomach ulcer) worse than the pain.
I can no longer get Tibolone HRT which I need mentally, on account of the thyroid condition, and also because I have osteoporosis. I was offered Alendronate which is cheap and causes stomach ulcers so I could not take it. This is the same for a lot of people - so bad that the Osteoporosis Society took the NHS to the European Court.
If you look on the endometriosis section, you will see that a lot of women are having to pay for expensive treatment privately as I had to do many years ago - nothing has changed.
These are all serious long-term health conditions and regardless of what an NHS consultant might say, GPs have a specified budget and if they do not have the money, then certain things are cut especially pain relief. The priorities are always cancer and other imminently life threatening conditions.
Unfortunately you have pay for prescriptions drugs on Private Health…the insurance doesn’t cover drugs…. ….except when you are an in-patient…..& that really does show you how the (?) £10 we now pay for an NHS prescription is usually a very good deal….especially if you buy the annual ‘season ticket’.I have left a Private hospital…clutching my prescribed drugs…& a credit card receipt that made my eyes water.
On the contrary not all GP's won't prescribe omeprazole, mine does, 20mg twice a day. Maybe if it is not considered the better option, or if it's widely available to buy for a considerable amount less than a prescription cost, or if it's something no longer on the prescribing list (which is updated regularly) but readily available to purchase, these I can understand.If your Specialists say you need the two meds & your GP won't prescribe them (shared care in place?) or not wishing to be responsible for the monitoring of or any potential issues with either then your Specialists should prescribe them surely?
It depends on the GP practice, I suppose. You can buy Omeprazole over the counter in 10mg tablets, not 20. Mine is very penny pinching and tell me the cost of everything. I have just ordered Fexofenadine (an anti histamine) on line. The GP will not prescribe it even though more than one consultant specialist on the NHS has said I need it. This is on the grounds of cost as he said he has a lot of patients with hay fever and they buy Loradine over the counter - I have to take three Loradine to get any effect and this is dangerous. The GP surgery holds the budget and if they cannot afford everything that everyone is prescribed by NHS specialists, they do not have to prescribe it. In the case of the allergies, I am not seeing a specialist as the NHS consultations were a one off. I was told I might benefit from sensitisation treatment but that I could not have it done on the NHS. I will have it when I get round to it but have numerous issues to sort out first. I was prescribed Omeprazole by an NHS gastroenterologist but I cannot get it from the GP - I don't want it anyway as I have an ongoing stomach bug but that is not the reason for the refusal. The stomach bug is not being treated. I generally pay for everything. You mention an on-line "assessment" below - that is what I filled in. It only takes a minute. You cannot insist on or demand treatments from the GP - they have a budget that they have to make go round. You are correct that it is more expensive privately as the NHS gets most drugs at a reduced price. You are lucky if you do not have to purchase medication on line and have a GP who will issue the prescriptions recommended by specialists - I don't have that luxury. It has been an ongoing saga. I had endometriosis for many years and I always had to pay for treatment. Try getting that treated free on the NHS - it used to be impossible. I take Tibolone HRT which was prescribed around 13 years ago for osteoporosis arising from the endometriosis. It also helps mentally and has a cognitive effect. Recently the GP refused to prescribe it. I went to see an endocrinologist privately and he has advised the GP to prescribe it along with Levothyroxine as I have developed a multi nodular goitre and have had abnormal TSH levels for 20 years. The mental issues are caused by the thyroid and the oestrogen in Tibolone has been helping me. I could not get that previously and it remains to be seen whether I will have to pay for it in future. The GP said they have many patients with my thyroid readings and the practice does not treat them - so it is not just me. I only got enough Tibolone and Levothyroxine for a few weeks. Some might suggest a different GP but I do not live in a poor area and have no reason to suppose another one might be more accommodating and issue prescriptions for what I actually need or have been prescribed by specialists.
I can't be unusual in never once needing to buy any medication, including treatment for endometriosis, this was in the 80's. The only time I’ve had a private consultation was in the 90's following a hospital blunder & delay of one year for an appointment which I could little afford time wise & which made me lose faith. I did ensure the I could transfer to the Specialists NHS clinic following the necessary exploratory op & was by the following month, as my body determined.
I don't know about tibolone but fexofenadine can be bought as Allevia from Boots.
The medication for endometriosis is cheap when it comes off patent so I suppose the NHS has started to treat it. A lot of young women have to give up work so I suppose it is getting very expensive for the country.
I don't know what drugs are used nowadays. However, the surgical procedures are expensive. It never used to be treated on the NHS and all the expertise was in the private sector. The NHS made a complete mess of it for me - I had to cancel my wedding in 1971 and I paid for two operations in 1976 and 1980. The consultant I had in 1980 said it confounded him how anybody (the NHS) could make such a mess of something so simple - added to which my case was the easiest and most responsive he had ever had. They were simply too stupid to work out the drug combination. He said the medication which worked for me only had a 50% success rate generally. He also said it could not be cured but could have been if treated properly at the outset when it must have been extremely mild for a long time - it was. It recurred again in 1987 but following a sudden menopause in 1988 I had 20 further years of excrutiating sciatica caused by endometriosis. In total that was 40 years of pain and misery. Quite frankly, I would have been better off dead. If you look on the endometriosis section of Health Unlocked, nothing on the NHS has changed much with many young girls having to pay for expensive surgery. I just don't know how the NHS expects girls aged about 17/22 to find the money for private surgery but it does.
Fenofexadine used to be prescription only. I am relieved I can get it especially at Boots which I did not know. Just as well I did not press the GP for it! However, I need the 180 mg tablet which I can get on line. This works better taken mid-day just before the pollen count is high. It is difficult to break the tablets and 120 mg is not enough even twice a day. You would think the NHS could work that out but not a bit of it.
I am also relieved I can get Tibolone on-line. All I need the GP to prescribe now is Levothyroxine permanently. He said the practice did not prescribe it for people with my TSH blood readings - over 6 for 20 years but recently over 8 - and it had to be over 10. However, I have developed a goitre and this is the reason for giving it to me now. They should have known that would happen, in my opinion.
People should not have to fight and complain to get basic medical treatment. Doubtless those who are well enough to fight are not the most ill. When RA came on suddenly in 2014 I had a six month wait for an NHS appt. I saw a rheumatologist privately then because of the wait but he diagnosed gout. However, it was too late, as the consultant said. According to NICE, people with suspected RA should be seen within three or four months. I was grateful for all the free tests and scans but in the end I had to work out my own treatment which was electro acupuncture and Chinese herbal medicine.
Anyway, many thanks for the information re Fenofexadine which is quite a relief.
I have discovered the reason for not being able to get Tibolone is that there has been a dire shortage of HRT since 2017. I can source it overseas without a prescription and likewise Levothyroxine. I might just take Chinese herbal medicine as it relieved my RA symptoms dramatically and had a good cognitive effect, improving my thyroid readings. It has a slight anti allergen effect also. It is a lot cheaper and easier than having to source and pay for three different medications. I suppose I am used to self-medicating which seems to be the way the NHS is going. Incidentally, I don't know how you obtained medication for endometriosis without surgical investigation to rule out cancer - which is expensive privately. The symptms are exactly the same and cancer always has to be ruled out which is why so many young girls wait for years on end for treatment and in fact until it is too late.
You're correct. Naproxen cannot currently be purchased online without a prescription, or 'an assessment' whatever that entails, but the cost of this will be included the price of a med that's for sure. I think I'm correct in saying that generally though a private prescription has to be written up, this ranks up the price of the product too of course. Though why anyone would need to purchase it online when a GP can prescribe it is an odd thing to me. If a GP won't prescribe it for the patient then there must be a good reason medically, ergo you shouldn’t be searching to buy it online. Self medicating shouldn’t be encouraged.
The reason for purchasing it on line is that the original poster Whezziewhoozie said her GP had asked her to use other painkillers but she wanted the Naproxen. This was on the grounds of cost. Of course, you can complain but you will not get anywhere and it is simply a waste of time.
Be very careful buying HRT ….OTC…You can get advice on Hormone drugs free, from all sorts of clinics ……HRT is not just not a medication to get you through the menopause….it can cause some very serious side effects if you pick the wrong one for you.
Thanks - I am 73 and I seriously need Tibolone for a variety of reasons. I had endometriosis for 20 years (aged 20 - 40) and then menopause at 40. The problem is that I cannot get Tibolone now from the GP and an endocrinologist strongly recommended I continue with it. At my age, I am not up to arguing with doctors and have the money to just pay. I have serious mental issues and also osteoporosis. I actually find Chinese herbal medicine a lot better but I cannot currently get it. It is perhaps four times as strong as Tibolone. Thanks - I am grateful for your post.
I forgot to mention that a year or so ago the government announced that HRT was going to be made available over the counter to cut costs.
It seems to me that everything that affects only women or usually women is neglected on the NHS. Many women need HRT, like me, for medical reasons. The NHS still does not treat endometriosis properly or at all. However, I will be glad if I can buy it over the counter instead of having a raging battle every month or so with the GP. I used to get prescriptions for HRT for six months then the NHS limited them to three months, then two months, then 28 days. I do not take it for the fun of it but initially because of a scan showing severe osteoporosis - I could not get a scan done on the NHS for years because I have fair skin and my mother had good bones so the severity was entirely the fault of the NHS. The NHS is a total joke. Maybe I should have used a fake tan and dyed my hair. My osteopath said she had never heard such drivel throughout her medical training.
The only problem with HRT being available OTC as I said …..is you need to have the right one for you.You say you are fortunate enough to be able to pay ….so why don’t you find a Private practice near you & make an appointment.If you had a letter from your endocrinologist I’m sure a private doctor would offer you a prescription…..of what’s he/she thought appropriate.
After the menopause at 40 I tried just about every HRT on the market and I was allergic to it. It also reactivated endometriosis. I also do not agree with the cruelty involved in taking natural oestrogen - mares are tortured to death.
I had a dreadful bone scan showing severe osteoporosis at about age 58. I could not take the standard bone medicine, Alenodrate, as I had stomch problems. The GP suggested Tibolone because it is a chemical which stimulates the body to produce its own hormones and I am not therefore not allergic to the hormones. I do not need an alternative as I am more than happy with Tibolone. It increased bone density 7% in 18 months. I have no need to see anyone else as I can buy Tibolone now on the internet. It also has a good cognitive effect. The endocrinologist said this was because the thyroid was not working properly and the oestrogen was compensating. I am more than happy with the endocrinologist. I can pay for the medicines but I am not paying to see another specialist and my insurers would not pay for that either.
Hi Whezziewhoozie,
I am so sorry to hear that your GP has done this without consulting with you and involving you in the process.
As many others have suggested it may be worth reaching out to your rheumatology team and seeing if your rheumatologist can write a supporting letter outlining their reasoning for the prescriptions they suggest, in order to hopefully have the GP see why they are necessary.
You may also wish to get in touch with the Patient Advice and Liaison service to see what support they can offer. They may be able to set up a meeting between you, your GP and a rheumatology team representative to collectively decide the most appropriate treatment course for you (Find out more at: nhs.uk/nhs-services/hospita...).
I hope you find this information useful and wish you all the best. Should you require any additional information or support please contact our helpline on 0800 298 7650 (Mon-Fri, 9.30am-4.30pm) or email us at helpline@nras.org.uk
Best wishes,
Hannah - NRAS Information and Support coordinator
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