Megabucks

Shysal, hope you stick with it and get the right level of Methotrexate sorted. I've had RA since I was 29 and struggled with constant pain and morning stiffness for 7years until a consultant suggested the second line drug Methotrexate. I didn't want to try it initially if only because it would been accepting that I had got force. But at the time my children were 6 and 4 so I had to try to keep as mobile as possible for them. 25 years later I still take it. Unfortunately it couldn't reverse the damage already done to my joints(if only I'd stumbled across this consultant earlier) but the early morning stiffness went and finally I understood what they meant by flare ups. I now had them rather than constant pain everywhere. Methotrexate for me was a life saver. Eventually I was able to return to full time work. Ok I did decide in 2017 to take early retirement mainly because of feeling exhausted at the end of the week and no longer being able to stand on the bus commute but without taking methotrexate I hate to think what life could have been like.

Hi Shysal, Methotrexate is a dreadful drug and does me no favours at all. I'm glad I'm nolonger taking it. You have to balance exercise with rest. Once I am moving I feel OK, it's the starting up after stopping that is a killer! But RA makes you very tired, and the trick is knowing when to take things easy and rest up. I have not been very good at that the last few years, but I am getting better. I used to think that if I took a day off work, then I had to be mad busy at home or out and about, otherwise it was a wasted day. Now however I am perfectly OK with having a 'slow day' if my body is telling me that's what it needs.

The person who discovers the cure for RA is going to win a Nobel prize!

hahaha! Luckygirl - I think I'll have to!!!

Marydoll, thank you for the info. I had heard about the chronic fatigue but fortunately have not yet experienced it, but it is only early days. I have been on one information morning at the hospital but obviously still have lots to learn. I shall remember your words if/when brain fog sets in. I do have a mental block on certain words but think that is normal at my age (72).

I'd ask the pharmacist why that label is there.

shysal, I was sent on a six week fatigue management course, as chronic fatigue is a major symptom of RA. It was a revelation!
We had talks from various professionals and it was explained to us why we had our symptoms and how to lesson them.
We were advised to PACE ourselves, with active periods followed by periods of rest. It was stressed that rest periods were essential. Just talking to others with the same condition was such a relief to know that I was not alone.
The other symptom that was discussed was brain fog, which is also another symptom. Initially I thought I might have dementia when I couldn't concentrate on things and was becoming so forgetful. To hear that this is a common factor in RA, made me feel so much better. One lady burst into tears, when she realised she wasn't going mad after all.

When I was working, my physio advised me to have a lie down at lunchtime and then again at 3pm, when school finished!! A totally impractical piece of advice, when you are part of the management team in a school and on call all day! .

Alwaysreading1, I been taking Methotrexate for less than a year and have been given two different brands on and off. I didn't know about the side effect problem you mention so shall make a note of any worsening on one particular brand. My dose is still being adjusted and am trying very hard to reduce the steroids which I was started on before diagnosis, so not yet on an even keel.

Marydoll, is one supposed to rest? I was told that no amount of exercise is too much and have found keeping moving helps a lot.

My sympathy goes to all who suffer from RA, I am just learning how the symptoms can come and go at random. I never know which bit of me will flare up next!

Put a sticker over it so you don't have to keep looking at it.

I do hope those of you with RA get some relief - what a dreadful illness.

I too think that is a really offensive thing to do, you are not responsible for the cost of medicine or for prescribing it. As you say someone could stop taking essential drugs because of this, I would definitely take it further.

You need that medication, GrannyLiv, so keep taking the pills.

Thanks for your input folks. I think I will raise this with my consultant, Jalimall08. I thought that I would not feel intimidated by it, but now that I have seen it twice a day for the past week,it is beginning to grate on me and I can imagine that someone could feel bullied into stopping taking it because they don't want to cost the NHS a lot of money. If it IS a joke,it'snot a very funny one ...

I wondered about that too. Not exactly professional behaviour.

Grannyliv I think that perhaps you should show the packet with the label MEGABUCKS to your doctor or consultant.
It could be someone's idea of a joke but it's not funny, in fact it's offensive as no-one chooses to be ill and the consultant decides which medication is appropriate and knows the cost of it too.

Jalima yes they should be able to negotiate good deals. I am not sure how it all works re purchasing.. left to different areas hence the so called post-code lottery etc. If the Dept of Health had a national purchasing department (it may do but I did not think so) that might help!

Good point PECS; however, when relatively new drugs come off licence they should become cheaper when other companies can begin to produce them. Some are still very costly to produce - but the NHS is being over-charged for many supposedly cheap generic drugs. With all their purchasing power how can this happen?

Whilst I do appreciate the costs involved in research, testing and manufacture of the pharmaceuticals that keep us all more comfortable and alive I am always concerned at the huge profits that many pharma companies make.

Not sure I can square it when possibly those benefiting most, financially, are not those whose work has created the drugs.

MawBroon the same thing happened in our local Boots - quite barbed comments about the cost of one drug when we picked up a prescription
DH had a quiet word with the pharmacist. She never mentioned cost again.

Boots do have difficulties obtaining some medications too.

I'm on methotrexate for Rheumatoid Arthritis which i've been taking for years. Last year my local Boots told me they couldn't supply my usual brand because they were going to start using a brand that was cheaper. This as those of you who take it know can be a problem because a different brand can make the side effects worse. Luckily i've found a local pharmacy that has helped me. Why does everything have to come down to cost. Its bad enough having the disease in the first place.

GrannyLiv, when I asked my consultant why I couldn't have Methotrexate, his blunt reply was: You will be dead in three months, due to your lung conditions.
I don't think I will bother, said I.

I take a cocktail of Sulfazalazine, Hydroxychloroquine and Meloxicam, but my RA is difficult to manage due to all my other conditions.

I have a fantastic consultant, who always does his very best for me and I can't ask for anything more.
I just make the best of the good days and get on with things. I'm my own worst enemy, as I don't rest as often as I should.

Here's hoping your new medication will improve your quality of life.

Wow Marydoll, that is expensive. I have no notion what drugs are worth and if the cost can be justified but one does hear of pharmaceutical companies raking it in.

I have lots of conditions and have many tablets on repeat prescription every month. I am very grateful to the NHS but I have paid my dues over many, many years.

If drugs are life-savers and/or provide pain relief or stabilise conditions they are worth it. I just worry about our dear old NHS being ripped off.

GrannyLiv I hope the new tablets help. I wonder if this megabucks label is a one-off or will it be stuck on all expensive drugs? Patients should not be guilt-tripped regarding the cost of their medication.

Hi Marydoll, DH said pretty much the same thing when I looked up the costs!

I don't do well on Methotrexate either, they tried combining it with Hydroxychloroquine and that did no good either. My consultant agreed to try a 'biologic' medication as he has heard of some good results and I have to say that whilst I have been taking it barely a year, I do feel a benefit.

How do you get on with your regime?

Maw, I had a similar experience years ago with new asthma medication. When the pharmacist went on about the cost, I suggested he took it up with my consultant.

I remember getting very shirty when the pharmacist in Boots commented about the cost of some of Paw’s (many, many) drugs. I pointed out they were lifesaving (immunosuppressants among them) and did they have a problem with that? ? (maw in strop emoticon)

I checked online, it's ££630 for 56 tablets. So compared to other medication, it does seem expensive.

For example, I can't have Methotrexate, so I am prescribed Sulfasalazine as part of my RA regime, it's £36 for 100 tablets. That's a big difference in cost. Your consultant wouldn't prescribe it if you didn't need it.

It's a bu**** of a condition. Hopefully your medication will give you some respite.?