I have PMR and have been tapering prednisone for the past year. I amcurrently at 6mg. My rheumy is pushy and insists I decrease by 1mg each month. I am not so compliant due to pain, so I am choosing to decrease at 1/2mg per month. We butt heads often because he wants to add Methotrexate.
Today he called and said my dexa scan was normal but my inflammatory markers are once again on the rise and that my only option left is methotrexate. He said he thinks I am a crossover between PMR & RA even though I repeatedly test negative for RA. Maybe it’s just me, but I have a hard time convincing myself to take a drug with horrible side effects for something I may not even have. He says prolonged steroids are dangerous, but I’d rather take my chances at low dose steroids than create further issues with more side effects and
further immune suppression. Does anyone else have a pushy rheumy who can’t decide on a diagnosis? I think he is getting ready to kick me to the curb because I won’t take the methotrexate.
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Zareda
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I think you’ll find that this is an all too common experience. My Rheumatologist was so keen that I took Methotrexate. She told me, ask any Rheumatologist whether they would rather take Prednisalone or Methotrexate and they would always choose Methotrexate. Not everyone experiences horrible side effects. I resisted it for the same reasons as you. I got down to 3 mgs of Prednisalone and developed GCA. I am now on Ro- Actemra ( Tocilizumab). It enabled me to reduce from 40 mgs of Pred to 9 mgs in 4/5 months. I do not feel great but after 4.6 years of Pred I have developed borderline steroid induced diabetes, high blood pressure and cataracts. I sometimes wonder if I would have been better off trying Methotrexate, although everything I read seemed to suggest it was hit or miss.
One of the key reasons my taper was difficult turned out to be the presence of undiagnosed GCA/LVV. You haven’t been on Pred for that long though. The average time with PMR is anything from 2 years plus, averaging out at about 6 years. 0.5 would be a better drop for you. I doubt Methotrexate would add much value now. You need to go really slowly now to enable your Adrenal system to recover. Your Rheumatologist should be aware of this. Perhaps an Endocrinologist could help at this stage. Low Cortisol can make you feel awful.
Thanks for your reply. I know I don’t have much experience at this but, I figured if I’m already down to 6.0 (even tough I have pain) I wanted to try reducing without methotrexate. The part I’m confused about is if the inflammation is already increasing at 6.....why would he want me to continue tapering instead of holding where I am. In May at 10mg my markers were normal. At 7mg, I started to decline and wanted to hold there for longer than a month but he flipped out on me saying I had to get off the steroids and it wasn’t even a year. Why won’t they listen to patient input 🤦🏻♀️ It’s very frustrating.
It is very frustrating. Symptoms rule, even if your bloods showed no inflammation, if you are still getting pains then there is no sense in reducing your dose, quite the opposite. I agree that Methotrexate is only really useful to get off much higher doses than you are on, if it is going to be useful to you. I think you are doing well actually. Perhaps you could try another Rheumatologist who really gets these diseases?
You've only been on Pred for one year and he wants you off of them? My doctor sounded the same but that's not how this works. You will hold at 7 mg longer than any other dose, because your body will be slow at waking up and making it's own cortisol.
That is exactly what my body was trying to tell me but he wouldn’t listen. His goal is just to get me off steroids. When I told him I’m really sliding backwards on 6mg he said just keep tapering 1mg/month.
It took me a long time, I think a year to go down from 7 mg to 5 mg. This is the time your adrenals are supposed to take over. Our bodies naturally make 6 mg of cortisol a day. Our adrenals might not wake up as fast as we want them to, that's why this is a tough time. Once you get past 5 mg it gets easier but to taper 1 mg a month is way too much. I was never able to reduce more than .25 mg at a time especially at the lower doses, 7 mg and lower. I went to 4 doctors before I found one who listens to me. You need a doctor who you can work with and the stress this doctor is causing you will also cause you more physical pain. Look for one who understands PMR and you and always, always listen to your body. Good luck.
He is talking rubbish - it is a typical case of not understanding what PMR is. The reduction is not a relentless reduction to zero, it is tapering or titration of the dose to identify the lowest dose that is effective for YOU to remain at longer term. Not being able to get to zero does NOT mean this is RA or a "crossover" with both, it is your version of PMR.
The study from the Rochester Mayo clinic reported here
found that about 1 in 5 patients is able to get of pred in a year, by 2 years it is 1 in 3. To get half off pred takes up to just under 6 years. And 40% of us still require some pred at 10 years. PMR is not a short term illness for which you take a course of pred and stop. You stop reducing when the symptoms return, showing you have overshot the dose you need. In your case it is 7mg - a safe dose for moderate term use, it is similar to the amount of corticosteroid your body required to function, normally produced in the form of cortisol by the adrenal glands. The Mayo study found that it takes an average of 18 month to get to 5mg - you are well within that time scale.
I know it isn't easy but try to find a doctor who is willing to listen to the patient and work with them.
Few doctors have taken pred, probably even fewer have taken methotrexate, so lord only knows what qualifies them to insist they'd rather take mtx than pred. This brings it into real life rather than the opion of the individual doctor:
"Methotrexate is the gold-standard treatment for rheumatoid arthritis. But only about 30 percent of patients achieve low disease activity or remission on methotrexate alone. Of the remaining 70 percent, some can't tolerate the drug at all because of side effects like mouth ulcers, nausea and vomiting and hair loss."
... "What proportion of patients can't tolerate methotrexate?
Roughly 30 to 25 percent. It took a while to figure out that it was that big. Many docs would have said, "Well, it's only 5 percent of my population, the whole issue is irrelevant." But once we started getting population data, particularly pharmacy data in the U.S. where you can see every prescription filled and you can see who is on a biologic or who is on a JAK [janus kinase] drug, you can see how many are also getting methotrexate - then you realize if a doctor really thought it was that low, he's probably wrong or his practice is vastly different than the national average. Some countries started collecting data, and it generally is about 25 to 35 percent of our RA population who are not on background methotrexate. It is a pretty big population."
So for about a third of RA patients - it doesn't work at all. It doesn't work to reduce pred for a fair proportion of PMR patients either. And then you have the ones who didn't take it because they couldn't cope with the side effects - another approximately one third. I tried it - after a month I could barely walk to the village and back for the fatigue. Never mind the increased or appearance of pred adverse effects that I had never suffered before. I was constantly hungry and gained weight - no change in the low carb diet that normally means I am never desperate for food! I had general joint and muscle pain - almost as bad as PMR without pred. I was bruising, not generally a problem and I am on an anticoagulant therapy. My hair started to fall out in clumps within 7-10 days. Nothing pred has done to me over the years was as bad as that.
DMARDs (mtx is one) MAY allow the patient to get to a lower dose of pred - but not necessarily OFF pred. Not even tocilizumab guarantees that - half of patients still need some pred, a lot less pred but still some. And that is commonly about 5-8mg pred. Where you are already without adding in another heavy duty medication that may or may not work for you. Disease Modifying Anit-Rheumatic Drugs work to change the disease process in rheumatoid diseae - PMR is NOT rheumatoid disease, it is a vasculitis.
If you had been stuck like this at a dose well above 10mg I wouldn't have said the same, I'd have suggested trying mtx, you can always stop as I did after 4 weeks. But you would be at a fairly low dose - which after a year is a good place to be.
Would your GP be prepared to manage your scripts? I know a lot of US GPs won't "interfere" with the rheumies ideas but some do.
The doctor I saw on Monday said there is going to be trials when they get the funding (when!)....to see the advantages of MTX and Tocilizumab, in patients with "just" PMR.....will that be the first in this country?.....
Not looking forward to getting mine on Monday, but feel so ill, I feel I owe it to myself to just try.....
They are just planning the grant application for an mtx study in "longPMR" - even that isn't going to be any time soon, even if they get the money. Which to be honest, I have my doubts about ... They don't even seem to know how to define "lomgPMR" never mind there be any money. Plus the study is likely to take 3 years even once it is going because recruitment will be a nightmare ...
You do owe it to yourself to try. I am just super sensitive to all meds and I know my body....particularly my stomach will rebel at that medication. Everyone is different and I’m not trying to sway anyone’s decision about Methotrexate. I hope you it works well for you and provides the relief you are looking for.
Thank you so much for that information. It at least helps me to know I’m not just a combative patient. He really makes me feel like I have no common sense when I leave that office. I dread going there but my GP just passes the buck to him. I really see no reason why she can’t manage the script and necessary lab work. No one wants to do their job anymore..,.,she is a doctor after all, so do some doctoring! Sorry for the rant but I am totally unimpressed with healthcare here and I seem to have the knack at picking the worst drs. I would switch but it is so hard to get a rheumatologist appt. It took 8 months to get my initial appt.
Thank you PMRpro! You are like a walking book of knowledge and I always look forward to reading your responses. Everyone on this sight is so helpful. I wish you could all be my doctor!
We are all patients who have walked the walk before you and have made it our business to know some facts about how it all works. The doctors read the text books - which don't reflect real life.
I had PMR and then giant cell arteritis and when the GCA developed is was on 60mg pred. Altogether I was on steroids for 7 years. The last stages of reduction were very slow but I did it very gradually and have now been completely free of PMR and pain free for 5+ years. Listen to your body!
10. In my experience Methotrexate is not as effective in treating PMR or GCA as it is for rheumatoid arthritis although some trials have shown a small beneficial effect.
Thanks for sharing the great information. I would love to share it with my doctor but he gets so defensive at the slightest suggestion of going against his plan.
Hubby and I were allowed in together as a "family bubble" for our flu shots. If you have a willing housemate the medics really have no justification for not allowing him/her to accompany you, especially as everyone is masked and has passed the usual covid protocol.
It really seems like you do need a new doctor. Are you sure you can't convince the GP to manage your prescription? It sounds like your condition is quite classic and uncomplicated so, as you have learned, a rheumatologist can be a liabilty rather than a help.
My doctor has been very good so she didn't really need it, but I bought her a gift, a book about PMR and GCA. It's aimed at professionals. Expensive, but it might be worth trying if you are stuck with this rheumatologist:
Polymyalgia Rheumatica and Giant Cell Arteritis, by Bhaskar Dasgupta (Editor), Christian Dejaco (Editor). Oxford University Press (April 11 2016)
PMRPro and Sheffield Jane have told it like it is....... Nothing more to add but if you’re in pain at the dose you’re now on, it clearly isn’t quite enough - too rapid a taper. It’s taken me over 4.5yrs to get from 20mg to 0.5mg/day - I’ve never had a flare. I may - or may not - give zero mg a go. However, I’ve made it clear to the GP that it’ll be my choice!
Thank you! I couldn’t ask for better information and suggestions. I’m trying to be firm with my dr but he’s gives me enough flack that I feel intimidated. I’m going to make a better effort to stand up to him.
I agree with everyone here. I've had PMR for 4.5 years now and I'm finally down to 3.50-3 mg Pred. It took the longest time to decrease from 7 mg to 5 mg because this is the time when your body needs to start making its own cortisol (about 6 mg /day) and sometimes it's slow at waking up. So, if you have pain maybe you should go up to the dose that made you feel better and reduce slowly. My doctor reacted the same way yours did. When I was at 5 mg and very excited to have made it, he recommended Methotrexate. I was so disappointed he didn't see the progress I made and I refused the Methotrexate because it has its own side effects. I've been able to reduce from 5 mg to 3 mg in 9 months. I always do a very slow reduction because I don't want to flare and have to go up on the dose. I can only reduce by .25 mg. at a time and that's not every month. I reduce by how I feel. Contrary to what your doctor says, there's no set schedule, pay attention to your body and the pain you have. I had been misdiagnosed with RA by the first doctor even though my tests came back negative and he said it was seronegative RA and prescribed Methotrexate. I refused it and looked for another doctor. To this day, 4.5 years later I don't have RA and I'm on my 4th doctor who really listens to me and we work together. Personally, I couldn't reduce by 1/2mg a month, it's too much, too fast. I think you should kick your doctor to the curb and find a new one who you can work with. It's not easy, they all seem to sound the same.
Envious that you have found a dr that will work with you. I really feel I could be successful at this if he would let me listen to my body and work with me. I’m hoping that if I stay at 6mg for awhile that my body will adapt and the pain will slowly subside. I’m not going to drop any lower until I get the pain under control...,even if I have to tell him I’m at 5 by my next visit.
I do that too. Feel guilty but it cuts the stress the GP gives out. (My GP ok tho). Done the same with Alendronic Acid - just flick it in the bin every Monday GP non the wiser . Hope I get another Dexa scan and my bone density improved ha ha .
Yes, I found a doctor(s) but I have to travel 70 miles to see them. Couldn't find a good doctor or healthcare system that worked for me in my area. Actually, I go to a medical school in the Boston area and the student doctors are great. They ask ALL the questions because they don't want to miss anything and they are supervised by an experienced rheumy. At 6 mg did you feel the the pain right away, the next day, or did it take a couple of weeks to get bad? I believe I read on this forum that if the pain is felt right away it's the PMR but if the the pain comes back in 2-3 weeks, it's withdrawal symptoms. PMRpro correct me if I'm wrong. In any case your body will not adapt and the pain will not subside but the pain will get worse. The pain is inflammation and you have to reduce that. I personally have increased my dose a little until I'm pain free, will stay at that dose for 2 weeks (doctor recommended) and reduce very slowly from there because I can only reduce by .25 mg at a time.
Every time I decrease by 1/2mg my pain increases the next day and stays like that for two weeks then starts to ease a little but doesn’t get to a pain free level or close to that. The strange thing is that in the beginning Motrin or Tylenol would not touch the pain, but now Tylenol does help some so maybe it’s withdrawal I’m feeling on top of PMR. My inflammatory markers are creeping up too.
My Rheumy was the same wanted me to try Methotrexate,then Sulphazalasine.I have always resisted.Rod Hughes told me only reason to try steroid sparing drugs for PMR are if you are stuck on a really high dose of steroids or getting lots of steroid side effects.Finally after 2and 1/2 years am much more stable with and gently reducing on 3.5 mg soon to introduce 3 mg
I didn't get a definite diagnosis for ages, I was just about to ask for another opinion when my Rheum. asked if I would be willing to see another Rheum. as she was stuck, I thought that was wonderful as she was honest, and a good Rheum. Iam now injecting with Ro- Actemra, and am down to 1mg. of Pred. after 5yrs. I also take Hydrocortisone.
Hi everyone. I'm always amazed when I'm questioning something about our condition, I'll get a notification that resonates with me on this site. And today there it was....Methotrexate or not? I pretty much have the same story. My Rhuemy has been saying I should go on it since the early days of PMR as he says I have RA (even though my bloods say otherwise). However my gut says not to, and so far I haven't. However my question has and still is .......What if I do have RA? Am I then making the wrong decision by not using it. And am I making it worse by not taking it🤔.
From what I've read, prednisone is also used for patients with RA so surely it's okay to be sticking with the pred and not confusing things by adding another drug into the mix. As long as things are ticking along with reduction and side effects of course. What are your thoughts on this please?
Thanks everyone for all the amazing advice you give on here. Don't know how I ever managed before I found this group.🌻
If it WERE seronegative RA, then the difference between the pred and the mtx is that mtx is a DMARD, a disease modifying antirheumatic drug it alters the disease process in some way and reduces the erosive effect of RA on the joint linings so reducing the damage done in the long term.
That isn't much use!!! You can't really see a difference in the early stages except specific signs on certain imaging right at the start which suggest PMR. Eventually though RA appears as erosion in the joints - but still requiring imagining to confirm. And this
suggests about 20% of patients have something that LOOKS like PMR in every way but then turns into LORA later. You can understand why doctors get iffy about long lasting PMR ...
No - all RA really needs DMARDs to reduce the risk of joint damage. But you said "he says I have RA (even though my bloods say otherwise)" i.e. you have no blood markers for RA and that is called sero-negative RA - it doesn't make the RA any different in how it affects your body tissues.
Ohhhh right. Got it now. So now it is down to symptoms and another xray. My last xray over a year ago didnt show any signs and my symptoms in my opinion are not RA. But maybe I just don't want to accept it. Its so hard to know right from wrong with this strange condition we have. Thanks so much for your help. I appreciate it🙂
I feel the exact same way you do. I asked the rheumy if he sees any indication of RA since the bloodwork is repeatedly negative. He actually told me no..,he doesn’t see anything in the joints. No nodules, swelling, synovitis or joint erosion, That is the main reason I am fighting back against the Methotrexate. If he could give me evidence as opposed to a guess, I might be a little more willing to consider it. I hope you have better luck than me.
Interesting that more & more Rheumatologist’s seem to be suggesting MTX for Patients on Low Dose Prednisolone?......
I’ve not read anything to suggest they should be recommending it more?......
The only thing l can remember is when l attended a PMRGCA Roadshow one of the Consultants mentioned it was being considered to prescribe both Prednisolone & Methotrexate from the beginning but l never read or heard anymore about that line of treatment.
Well that’s interesting. Maybe that’s why he is so adamant about it. His reasoning is that I have no other options since my inflammatory markers are rising while on low dose. This is what frustrates me.....doesn’t he see that they are rising because he is pushing me to taper too fast! It doesn’t take a rocket scientist to see that the PMR is still active and 6mg is not enough to control it. He said you can’t stay on prednisone indefinitely and you can’t live with inflammation indefinitely, therefore, you must take the methotrexate.
And when it doesn't work? I live with pred indefinitely - 11+ years and counting and a lot of it at above 10mg. Tried mtx, no, that wasn't appealing at all! I may screw up the courage to try leflunomide - but a friend who did first developed peripheral neuropathy (no thanks) and having found a dose that seemed to avoid that but still work, she has since has a massive flare. Ar least I'm on one drug whose adverse effects are well known and I have very few, if any, of them.
Some of them seem to take this approach but people do stay on Prednisolone &/or Hydrocortisone indefinitely ( l may be one of those people) MTX isn’t the answer for everyone. But for me, it worked not once but twice & the first time the Prednisolone was certainly doing more harm than good.
However, for the past two years l’ve had an unrelenting battle with Steroids since they stopped the MTX (a knee jerk reaction by a Locum to a blood result according to my current Rheumatologist) it should have been tapered & monitored very closely but not stopped.
So l’m on a new regime now of increased Pred & MTX the only problem is l want to get the Pred lower, sooner & l should/do know better than that.....
I was wondering if using Methotrexate to get off steroids would just leave me then stuck on methotrexate. I have very little side effects from low dose prednisone. I realize that it could be causing problems I can’t see but so can Methotrexate. I really appreciate everyone’s input. I still believe a patient knows their body best and I have to go with my gut feeling that at this time, I’m not ready to tackle Methotrexate to get off steroids. I’ll keep tapering at a very slow pace.
The fundamental problem is that mtx realtively rarely gets you off pred altogether, if you have PMR it isn't a replacement. If it were they'd be using it from the start, not pred. And if 7mg is enough to maintain your PMR status - I fail to see any good reason for increasing the risk of immune system problems in terms of other illnesses such as cancer which many immunologists see as a long term problem when pred and mtx or other immunosuppressants are used together,
I chose to stop taking 20mg MTX on Mondays last December. I was sick of feeling sick. Most blood tests were verging on neutropenia and my GGT was steadily rising. Successive nfections. In April they insisted that I start taking it again but at half the dose but with folic acid daily at 5mg a day for 5 days instead on 10mg on Fridays. Did that for a couple of weeks and bloods went awry. Stopped for a couple of weeks. Bloods OK. Started again. Bloods awry. Not had any since June. I feel like I did years ago. Great, with some energy. On 3.5mg preds. Been up and down a few times but am comfortable now. Yes I get some PMR pain. The biggest help? Bisoprolol from March 2018. Such a difference.
My rheumy is also pushing Methotrexate and I'm resisting. I had slowly tapered to 6 mg pred (over period of 3 years) when I had a major stressor that caused PMR to rear its head again. She put me on 20 mg, then 15 then 10, all at 1 week apart. So now back to slow taper from 10. Very discouraging because it took me so long to get to 6. So she now is pushing hard to take Methotrexate in addition, but she doesn't know if it will help me taper faster. I can't figure out why I should put up with all the side effects if it won't allow me to go down faster. I have a call set up with her next week to ask all those questions. Will let you know.
Thank you! I appreciate your input. Its nice to know I’m not alone in this battle. I’ll be interested to see how you make out. I’ve only spoken on the phone with rheumy lately. I have follow up on Nov 9th. I’m prepared to do battle 😂
No, don't be pushed into it. They don't know the full outcomes of using steroids yet, and have no backup when it goes wrong. It's just that it is the only thing that works with the inflammation and it's cheap. I've ended up with Steroid myopathy. The Rheumys in Leeds are looking into Methotrexate and asking for folk to take part in new research. Yours is asking you to take something that is unknown longterm for PMR. Maybe you should ask for a second opinion. I'd be wary.
Methotrexate high dosage may introduce bad side effects. Low dosage of Methotrexate is usually given to gradually come off prednisalone. My husband has GCA and has been on Methotrexate 15mg once a week and he is now taking 10mg prednisalone gradually reducing. Before starting on Methotrexate your consultant must make several tests to ensure the person taking Methotrexate does not compromise their overall health. When my husband was on prednisalone he had few relapses hence introducing Methotrexate he is now doing well.
Glad to hear your husband is benefitting from methotrexate and was able to decrease his steroid. I realize everyone is different and we don’t all respond to meds the same way. I wish I had a crystal ball that would tell me that it will all work out, but it’s one day at a time for me. I just tend to be chicken to experiment with meds. But we all need to do what works us. Good luck with your husbands progress.
Hello Zareda,
I wish my rheumatologist had been on the ball like yours.
In short...I had PMR, told I was better and discharged after 2 years. I knew I wasnt and eventually on seeing 3rd Rheumatologist ( privately) was told RA.
Mistakes made by first & 2nd consultants:
1, 20% RA sufferers have normal blood tests including negative RA antigen. my inflamatory markers initially high came down with Prednisolone to normal levels.
2, I needed high dose prednisolone 40mgs to control pains. they never really went totally. 40mgs should have alerted consultant to a different diagnosis.
3, the odd stabbing pains and then swelling below thumb were ignored. initially only one hand but then both. I mentioned this at my first appt.
4: Diagnosis was made with an MRI of hand using FLUROSCOPY, this shows RA inflammation in surrounding tissues which dosnt show up under normal mri/xray.
Am 5 years on now and I have progressed to Tocilizumab. still on high dose Methotrexate but he hopes he can reduce this eventually.
My advice is to trust your consultant. Far too many people criticise the specialists on forums which, is sometimes understandable (as I found) but they are trying to help you and it is a difficult diagnosis to make with many cross overs as I can see from quickly reading your other replies
If I had started methotrexate sooner I would have avoided the damage to my hands and wrists. writing etc now difficult & painful quite often.
I gather I have PMR onset Rheumatoid Arthritis.
whilst I dont like having to take Methotrexate...does upset my gut rather. it is far better than taking steroids long term. incidentaly...I came off pred fairly quickly at the end and ignored the 'go slow' method. Was 5mgs to nil in 6 months. it made no difference at all.
Hi Trutta....thanks for your input. I try to look at things from all perspectives. I’ve just approached 1 year into PMR and I’m doing my best to get off steroids without causing a flare. The dr initially told me 12-18 months but I see that is not really the case. I hope you feel batter and are able to decrease ur meds.
Hi Zareda, like you I'm struggling to reduce Pred and have recently gone back up to 10mg from 8.5...what a difference! I am also pissible RA, but no antibodies when tested. Rheumy suggests probable seronegative RA, but wants to see me face to face before prescribing any treatment. Last 2 appts were changed to telephone appts, and my face to face in November has now been moved to December...that being the case, I'm following my gut at reducing Pred at no more than 1/2mg a month, as everytime I've reduced below 10mg so far, the pain levels have increased too much to bear. I only started Pred in late Feb, and by mid April had been refuced down to 5mg!! Luckily, we have a couple of fantastic and supportive GPs, who give me credir gor knowing my own body!
Your rheumy is nuts - I also had a similar reduction when I was first given pred, 2 weeks each of 15, 10 and 5mg and to zero. I was OK at 5mg until I missed the first 5mg dose and then I was as bad, if not worse than before - it took a long time to get the symptoms under control and I have never managed to get that low for any length of time since. Getting under 10mg in the first year can be impossible - and doctors need to remember that PMR is a chronic autoimmune disorder that has a median duration of management with pred of just under 6 years. Not 6 months ...
Thanks, PMRpro...it was your response to my post a few months back that gave me the courage and info needed to discuss my situation with my GP...who told me straight away to go back up to 10mg (from 5), and to taper really slowly. He also told me to take myself back up to the dose I felt 'well' on, while tapering, if needed. Until PMR hit me, I've been really fortunate with my health, and never een had painkillers in the house, so learning to manage and live with this is a massive learning curve! Thanks for all the support and info the site provides
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