Steroids and Osteoporosis

[annekat]

The only medical professional I have who acts like a doctor should is my PCP, a PA. But she isn't a doctor and knows next to nothing about Wegs, nor does she want to take on the responsibility for overseeing my treatment for it or learning much about it; she feels it is over her head. So she handles my general stuff like yearly exams, mammogram referrals, etc., but goes to extra effort and thinks of things like bone density scans, which was pre-Wegs, and other tests and things that should be routine for someone my age. Yet I feel I need a different PCP, a real doctor, who knows something about Wegs and can make sure the Wegs people are covering all the bases.

[windchime]

Anne I agree with you. It may be difficult though to find a PCP that has the knowledge, but certainly worth a try. Maybe you can contact your specialist office and ask them for some ideas. That's a good starting point. A lot of people let their rheurmy direct their case. Just some ideas to start you off. Good luck.

[annekat]

Anne I agree with you. It may be difficult though to find a PCP that has the knowledge, but certainly worth a try. Maybe you can contact your specialist office and ask them for some ideas. That's a good starting point. A lot of people let their rheurmy direct their case. Just some ideas to start you off. Good luck.

Unfortunately, I don't have what I'd call a specialist office... the pulmy who treats me wouldn't even refer me to an eye doc for my double vision, told me to have the PA do it. It's very straight and narrow with him and I'm expected to take care of any peripheral details. So I don't think he'd find me a new PCP; besides, I need to replace him, too, preferably with a rheumy, who as you say, might end up overseeing my WG care. My ENT referred me to an eye doc and is the best bet right now for helping me find a rheumy; I'm not so sure about the PCP issue, but I could ask. Possibly a new WG-savvy rheumy would be the one to ask about that. Thanks for your ideas, they help me sort things out.

[Alysia]

I read this thread yesterday and at that moment went to my GP. (she is always getting me in out of line, and whenever I need, VIP - weggie -me ).
I am on pred constantly almost 2 years (mostly 5 mg, sometimes more) and before that on changing doses from time to time, (at the beginning couple of months on 60mg), and still I never got prescription of any of the above, by all my docs.
SO I went to ask her. she gave me (for the first time! ) referal for bone scan and she said that after we will get the results we will think if I need something. she said that I will take something only if there is something wrong in the bone scan and only after consulting with endocrinologist.
well, I hope the bone scan will be ok....

[Alysia]

Strontium is key to bone support.

I asked my GP about it. she didnt know anything. she promised to search about it and then to tell me more. are you taking it as a supplement ?

[jvilner]

I just did it as infusion cause pill form will only irritate my esophagus and swallowing problems. It's 10 days later and I'm still feeling residual side effects.

[stephwest]

Strontium is key to bone support.

Have you seen the side effects of Protelos 2g granules sachets
Common: More than 1 in 100 people who take Protelos

• abnormal laboratory test results
  
• altered level of consciousness
  
• dermatitis
  
• diarrhoea
  
• eczema
  
• headaches
  
• heart attack
  
• loose stools
  
• memory loss
  
• nausea
  
• thromboembolism of the veins including pulmonary embolism

Uncommon: More than 1 in 1000 people who take Protelos

• seizures
  
  Protelos contains:
  
  • aspartame (E951)
    
  • maltodextrin
    
  • mannitol (E421)
    
  • strontium ranelate
    
    
    All best
    Stephen (trying not to break a leg)
  
  
  

[LisaT]

I just added this to my ever-growing list of questions for my next appointment. I think I will tell my GP's office they'd better book me two timeslots… or she will be behind for the rest of the day!

[marylz]

I was dx with Wegs in Feb 2013. After getting out of the hospital they told me to get a bone scan so they would have a starting point (I know that the not the right term, but you get the gist.) Now it's a year later and they had me get another one...the spine was the same ( with osteopenia ) and my hip had improved! So I guess they plan on me having the scan once a year.
I am also still on 10 mg pred, Calcium and Vit D as well as Boniva once a month as well a multitude of other meds!

[pberggren1]

I prefer to stay natural. I take 500mg of Cal/Mag Citrate, 4,000 IU of Vitamin D with meals. Then take the Strontium at night.....340mg.